Sweet Heart

Holiday fun!

2011-12-20T23:16:00.000-05:00

I guess there's no time like the holidays to pick back up with blogging, huh? There will be plenty to write about, that's for sure!

We certainly have started off our break from school with a bang! Rebecca planned and hosted a Christmas Sleepover for 8 of her friends. (yes, I am crazy!) They played games, ate, listened to music, ate, played hide and seek in the dark, ate, and finally went to sleep about halfway through the night (after a game of hide-and-seek at 2am!). They were up by 8:30am and ready to go again! Zach was the smart one and found refuge at Nana's house. Here are some pictures from the party...

Of course there was volleyball!

Rebecca found these cute snowman cupcakes to make (not as easy as you might think!)

These Christmas Tree Treats are made like Rice Crispy Treats

Pizza makes everyone happy!

They played Christmas Pictionary - can you guess this one?

This game is called Hedbandz and you ask yes/no questions to try to guess what your card is. Lots of fun!

Since we have some time off, we scheduled some doctor's appointments. Zach had a cleaning at the dentist. He did great except for the xrays --- those awful bitewings kept making him gag! He has always been very "gaggy" anyway. They tried putting a pinch of salt on his tongue to keep him from gagging (I've never heard of that!) and they were able to get one side done but not the other.

Rebecca had to have some cavities filled :( They used nitrous oxide on here and she was sooooo goofy! At one point, she said in a very nasally voice (because she had the "clown nose" thing on) "I can't find my hands!". Apparently, she couldn't feel her hands - she asked her daddy if he had them! She was so funny!

Then, today, Zach had his cardiology checkup with Dr. R. It's been 6 months since he's been seen and honestly, I was very anxious. You just never know when you are going to have a curve ball thrown your way when you are dealing with CHD. We weren't really seeing anything of concern with Zach except that he has seemed more tired lately - he has been falling asleep in the car after school a lot and that is not like him. He fights sleep. Anyway, we are praising the Lord because his checkup went wonderfully!!! He weighs 39.4 lbs, he is 41 inches tall, his bp and EKG were good, his pulse ox was 98 (yay!!!) and Dr. R. said his echo looks great. He didn't even have any leakage today! His meds are all staying the same (1 baby aspirin and 4 ml Enalipril 2xday) and we go back in 6 months.

So, for the rest of the week, we are spending time with friends and family and looking forward to Christmas day. Zach's nightly devotions started in on the Christmas story tonight. It is amazing to think about all that was happening at this time of year for Mary and Joseph. I'm sure Mary was miserable, being that she was 5 days away from giving birth. I'm sure she was excited, too. What do you suppose she was thinking? I bet she was scared to death! Being a first-time mother is nerve-wracking enough but to be the mother of the Son of God? Whoa! I wonder if the angel had to keep reminding her not to be afraid? I wonder if she questioned God about whether she was ready for this or not. I just pray that I can be a faithful servant like she was, that I can find favor with God and fulfill his will.

May you find joy and peace as you worship the Baby in the manger this Christmas.

The Quarterly Blogger

2011-08-20T21:45:00.001-04:00

"Mama, you REALLY need to do a new blog post."

"Mama, why don't you do a new blog post about __________."

"Mama, WHEN are you going to do a new blog post????"

My sweet daughter has been giving not-so-subtle hints about how SLACK I have been this summer with the blog. We were very busy and out of town a lot the first part of the summer and I was just plain lazy and uninspired the last part of the summer. I have still been keeping up with our heart buddies, though.

As all you heart families know, in the CHD world that we live in, no news to blog about is good news. Zach is doing very well in terms of his heart. His last echo showed only a trace leak in his mitral valve and excellent function otherwise. He is running circles around all of us and growing like a champ. There has been nothing much to report.

Nonetheless, I have been a slack mommy --- not taking pictures much and not recording the precious memories of the summer of 2011. There are no good excuses, really. Now that school is back in session, I have even less time to spend at my computer, so I guess I will just rename myself "The Quarterly Blogger."

Rebecca helped me by uploading some pictures to document our latest big milestone... Back to school!

School supplies are packed in the...

...bookbags, and...

...the lunch boxes are packed, too.

She is ready for 8th Grade, and...

...he is ready for Kindergarten!
He couldn't hold his bookbag up!:)

My two students!

It is so hard to believe that our firstborn is starting her last year of middle school! It is even harder to believe that our baby is starting 5K! Where does the time go??? We are so thankful for God's many blessings thus far and thank Him for what He is going to do during this school year!

We hope you are having a wonderful start to the school year too!

Vacation, vacation, vacation!

2011-06-23T23:17:00.000-04:00

So far this summer, our family has been all about vacationing! To start with, we went to Nags Head, NC with my family for half a week. The weather was incredible and we had a blast!

A mean game of Jenga between my brother, Phil and me. I won!

My mom and Aunt Mable

Monkey!

Rebecca and her best friend, Sarah

You think they are a little tired???

Next, the kids went with Nana and Papa to Myrtle Beach. They had a great time too! Unfortunately, I haven't gotten any pictures from their trip yet. I will have to post them later (maybe I'll get that done before the end of summer!).
While the kiddos were at the beach, Bill and I took off in the opposite direction to Gatlinburg, TN. We rented a nice little mountain cabin and just hung out! It was a great chance to relax and eat some good food. We went out to eat a couple of times (you have to go to the Apple Barn if you are anywhere near Pigeon Forge!!) but also took some good food to cook. We ate every meal out on the deck overlooking the mountains. Check out this view!

We actually needed this little fireplace burning a couple of the mornings while we drank our morning coffee!

So now, FCA Camp season has officially started. Bill is directing a couple of camps and helping with some others. Then, at the end of the summer, he will start a new job! We are excited that he will be the Athletic Director at a local high school!

Zach had a cardiology checkup this afternoon and everything looks and sounds good. He also had his first session of speech therapy, which went well. Zach has a very strong lisp and struggles with many blended sounds. The therapist gave us some pointers for things to work on at home. We will go every Thursday afternoon for the rest of the summer.

We hope you are enjoying your summer as well!

Summer... almost!

2011-05-28T07:43:00.000-04:00

The kids are out of school now! I am so looking forward to a schedule that is not packed so our family can enjoy spending time together.

I have to work on Tuesday :( and then we head to the beach! My side of the family is going to Nags Head this year --- there will be about 30 people there at various times throughout the week. It's always a blast --- crazy, but a blast!

Last Monday afternoon, Zach started running a fever. Once we got his fever down, he acted fine. Tuesday, he stayed home with Daddy and he ran no fever so we thought he was ok until 5pm when it started again. I took a look at his throat, which looked like he had 2 red-hot fireballs (you know the hot candies?) stuck back there. When I saw that, Zach did tell me that "his tongue hurt". The child hardly ever complains! I declare that he does not feel pain the way other children do, with all that he's been through. Anyway, I took him in on Wed. mornint and the dr. said his throat looked "impressive" but the strep test came back negative. She decided to treat him with an antibiotic anyway because the strep test is only about 90% accurate. He seems to be back to his old self again and was able to finish out the week at school.

So now, as a reward for taking such good care of Zach, I am the one suffering with a sore throat and now a "like-a-faucet-runny-nose" and sneezing. UUUGGGHHH! I woke up at 5:30am and could not go back to sleep. I kept trying to sneeze but could never get it out. My eyes are watering and watering. Please pray with me that everyone else can stay healthy for our beach trip.

Also, I have a couple of other prayer requests... Our neighbors, Jo and Al, have a new grandbaby. They knew something was not right all during the pregnancy but the possible diagnosis changed with each doctor's visit. He was born on Thursday, and they know he will have surgery sometime because his esophagus and stomach do not meet. I do not even know his name yet, but you can pray for Carter and Amy, his mom and dad. Many of you with heart babies know how they are feeling right now.

Also, please pray for Emma and her family, who go to church with my mom. I think Emma has the same heart defect as Zach and she had surgery on Thursday. I do not know any other details yet but will update when I know more.

Hope you have a blessed Memorial Day Weekend! We have so much to be thankful for in our country and we owe so much to those that made the ultimate sacrifice for our freedom and those who are serving us at this moment. Remember them this weekend!

Graduation Day

2011-05-19T22:05:00.000-04:00

Tonight, we attended Zach's pre-school graduation. I still cannot believe that he is 5 and ready to go to 5K! Anyway, he looked so handsome in his cap and gown. (sorry I didn't take the time to edit out the glowing eyes!)

They marched in to Pomp and Circumstance, sang a couple of songs and recited 2 Bible verses, then each of them shared their dream job for when they grow up...

Yes, you heard it right... when he grows up he wants to be a PIRATE! Too funny!

For a graduation gift, we gave Zach tickets to see the Imagination Movers at our local auditorium. He's jacked! They put on a really good show and have some great music.

We are so proud of our BIG boy! Congratulations Zach!

4 in 1

2011-05-15T14:37:00.001-04:00

I wish I could blame my absence on the issues that Blogger has been having lately, but no, I have just been very busy and when I have had any time to update, I have been very lazy :)

So, this post is about 4 updates in 1. A lot happened in the month of April... well, let me show you...

Easter Morning

GQ!

Daddy is so proud of his beautiful girl! So is Mommy!

Zach's 5th Birthday Party

Pigging out with Cousin Eli

Why did we buy him a playground when we could have gotten off cheap with a cardboard box?

Bill took advantage of our party guests... Brother-in-law, David and our neighbor Mr. Joe

Zach is testing out one of the swings to see if Daddy installed it properly. I think it passed inspection!

Mother's Day Tea at Zach's Preschool

This is Zach with his teacher, Mrs. Amy. She is awesome! This was such a special time for us mothers! They had all kinds of surprises for us --- artwork, a special song, and a handmade necklace.

The New Playground

Let me just brag on my husband a minute. He did such an awesome job putting together Zach's playset! It was quite an undertaking! Lots of blood, sweat, and tears!

Putting the last screw in the playground... or so we thought (more on that in a minute...)

Enjoying the slide for the first time

Thanking Daddy for all his hard work

My boys!

OK, so I promised to tell you more about Bill finishing the playground. First, answer one question:

Have you ever seen a playground do a somersault?

Neither have I, but apparently it doesn't go very well.

Unbeknownst to us, last Sunday night during the night there were some pretty strong storms that passed through. When we walked out to get in the car to go to school Monday morning, the playground was laying on its side about 30 feet away!!! I cannot believe that I didn't take a picture of it! I NEVER would have dreamed that the wind could have done that to it! I was so sick and felt so bad for Bill. The funny thing was, Zach did not get upset in the least. I don't think he really understood what had happened. Here are some pictures of the damage...

When Bill got home from taking Rebecca to school, there was a message on the answering machine from our neighbor, Mr. Joe, offering to help. Another neighbor, Mr. Al, also came over. We have some incredible neighbors! They detached the side extension and the slide, stood the house part back up, dug some really deep holes, cemented in some 4x4 posts, which are bolted to the house. Bill says it will still be standing at the Rapture!!!

Today he screwed in the last screw... again!

If we have any more disasters with the playground, I think we will go back to our trusty old cardboard box!

Guessing Game

2011-04-30T10:44:00.000-04:00

Can anyone guess what Zach is getting for his 5th birthday? Here are some hints...

Here's another hint... These two are going to get honorary engineering degrees when they are done!

April 29

2011-04-29T00:00:00.002-04:00

It was five years ago today that our family took a HUGE step of faith and drove a couple of hours to a small town hospital to meet our newest member.

We were risking our hearts on this little one, so precious as we lay eyes on him for the first time, his birth mother and grandmother weeping bittersweet tears nearby. The tables could have easily been turned on us that day --- we could have been the ones weeping as his rightful mother could have changed her mind. But it was God's divine plan for Zach to be a part of our family --- to complete our family --- and we are so thankful.

I can hardly believe that it has been five years. I cannot believe that Zach is a five-year-old. It just can't be possible that the little 6-pound baby who was fighting for his life is now a BIG BOY who is full of life. God has been so faithful to carry us through the hard times and smile with us through the good times. We are so thankful for you, Zach, for you have shown us what it is really like to live every day. You are a blessing!

Happy Birthday, Zach!

Dancin' Fool

2011-04-09T11:09:00.004-04:00

Click on the link to go to Zach's 4K blog --- scroll down to the last item in the latest post to watch a video.
This is a video of Zach on a field trip that their class took this week to see "Mr. Al".

http://prek4a.blogspot.com/

So, I guess you might can tell from the video, but Zach's side/arm is feeling much better. The Tylenol did not help all that much but Dr. Raunikar recommended ibuprofen, which is better for muscular/skeletal inflammation, which Zach has not taken since he was a toddler because of nosebleeds (ibuprofen thins the blood). Nonetheless, it really has helped a lot and he has not had a nosebleed yet. :) It is good to know that we have another option for a painkiller/fever reducer for him. He complained the other day when I picked him up under his arm, so I think it is still tender, so we are continuing to dose him for a few more days. All we can figure is that whatever position he was in during his cath caused him to have soreness.

Now that we are through with the flu season (it was raging for a few weeks around here!) and we have gotten through Zach's cath, we are going to take Zach back to Sunday School in the morning. It will be so good to have all 4 of us in church together again!

Hope you are all having a wonderful Spring weekend!

Update

2011-04-04T17:02:00.000-04:00

OK, to make up for all the pictures I have NOT taken lately, I thought I would post a few to document our last few days.

They have a sense of humor in the cath lab. You never know what you're going to find afterward...

When they did the cath, they went in both sides --- the left and the right groin. This is one of the 2 pressure dressings that Zach had on his catheter sites (along with a strategically placed washcloth). You can see the smiley face there as well as the time that the dressing was placed, to let recovery know how long to keep him laying flat. The tape is very thick and very sticky. Zach did great when we removed the first one and hollered like a banshee when we removed this one. I have written about the extreme trauma caused by Band-Aid removal around our house... he will need therapy later in life, I'm sure!

There has been an awful lot of this going on these past few days!

Cheeeeeesy grin!

You can see how he is holding his right arm. He is using it very little.

Bill took Zach to the pediatrician today and he agreed that Zach is definitely in some pain. He sent him down to x-ray and they did about 8 or 9 films! It wasn't long before the nurse called back to say that they did not see anything at all. So, what now???

I just got off the phone with our wonderful cardiologist, Dr. Raunikar. He said that it is possible that the position they had Zach in for the 3 hour cath may be the cause of his pain. (I guess I can relate it to the jaw pain I recently had after a 2 hour root canal. Ow!!!) When we put our bodies in positions they aren't used to, we feel it!

Silly boy --- even when he is in pain!

So, we are to give Tylenol for a couple of days and use a warm compress and see how he does. If he is not better then we will make a cardiology appointment for later this week.

These Cardiac Kids... always keeping us on our toes!

Feedback needed...

2011-04-04T09:36:00.000-04:00

I need to draw on the experience of all you other heart moms out there. We are trying to figure out something that has been going on with Zach...

Ever since we got home from MUSC, Zach has been complaining that his right side hurts up under his arm. He is really guarding that arm, holding it against his side and not using it much. We cannot pick him up under his arm and he does not want to lift his arm over his head. He has been on restricted activity since his cath, so he has had not opportunity to injur himself. I called MUSC and they had never heard of anything like this after a cath. I also talked to cardiology over the weekend and he could not think of any reason for the pain, unless it has to do with them raising his arms over his head during the cath. We have an appointment with the pediatrician at noon and have a call in with our cardiologist.

Anyone ever experienced anything like this post-cath?

I went to the doctor Friday because of a painful rash on my shoulder and under my arm and was diagnosed with shingles :( Very painful. The blisters are about dried up now but the pain continues... My fear is that this pain Zach is having is the precursor to the rash, although no one is supposed to be able to catch the shingles from me. If anything, he would get the chicken pox (but he has been vaccinated so hopefully he is covered there.)

I appreciate any light anyone can shed on our issues!

Cath Success!

2011-03-31T19:09:00.000-04:00

Zach was such a brave little man today! We are so proud of him. He was in the cath lab for over 3 hours today and Dr. Bandisode said everything looked great. All his pressures were right where they want them to be. She placed a device (a stopper of sorts) in the fenestration and they coiled a couple of co-lateral vessels while they were at it. Co-lateral vessels form as the body tries to compensate for itself.

She said that we can expect those co-lateral vessels to open up from time to time throughout his life. They serve no purpose and actually cause his heart to work harder. Hopefully, we won't see MUSC for a few years before he needs another cath done. I can truly say that, as much as we owe to the great folks at MUSC, we will not miss coming down here.

Zach is resting peacefully here in the hotel, watching Toy Story 3. We will be ready for bed soon since we are all wiped out. The next 3 days will be filled with lots of couch-potato activities. Please pray that we will be able to keep the little man on the couch!

Also pray for some new heart friends that we met this morning in the waiting room. Harrison (2 months old) is in PCICU right now. He went to the pedi on Tuesday for upper respiratory symptoms, was admitted to the hospital for tachycardia, and was finally transferred (flown in) last night. His mom and dad, Paige and Kyle, are really having a tough time as they watch their son suffer. As of this morning, Harrison's heart rate is still as high as 220. Please pray that the doctors will be able to find a drug therapy to bring his heart rate down and as they try to figure out the cause of these issues. I feel blessed to know that God used us to reach out to them in their time of need.

Thank you to everyone for all your prayers for us! God is an amazing God!

Cath-time

2011-03-27T17:33:00.000-04:00

We will be heading back down to MUSC this week for Zach's heart cath on Thursday morning. This is a routine thing... during the Fontan Completion, which he had last July, they left a fenestration, or small opening that acted as a pop-off valve in case the pressures got too high. Now it is time to go in and close it up.

After going through surgery last summer, a heart cath seems like no big deal. Nonetheless, I am nervous and full of dread and ready to get it over with and just wishing we could ride those 4 hours and just go to the beach and the Aquarium and skip the whole thing. Sigh...

We haven't really talked to Zach a whole lot about it yet. I found out after surgery that I have to be careful not to talk about MUSC in earshot of him because he immediately gets fretful and starts in with a barrage of questions. No sense worrying him prematurely. We will start talking to him this week and reassure him about it. I know I can rely on the many prayers of our "heart buddies" to bring us through!

I have to confess that I have taken NO pictures of my children all month! Zero. Zilch. Nada. Bad, bad mommy!!! So, here are some pics of Zach on his recent field trip to a local zoo (taken by his teacher, of course).

His teacher said he was like a mountain goat --- he climbed all over every rock in the place!

He told me about "the COOLEST thing ever"... getting to feed the lambs with a baby bottle (nevermind that it looks like these are baby goats, it was still the COOLEST thing ever!)

They got to take a bus ride around to feed various animals - you can see a llama or alpaca, an ostrich or emu, and some deer in this shot.

Ewwww!

13

2011-03-05T22:34:00.000-05:00

13. Some consider it an unlucky number. I consider it a very blessed number. 13 is the number of years that we have spent with our beautiful, bright, talented Rebecca. 13 years ago our baby girl looked like this...

Now... 13.

Daddy's little girl

Nana made an incredible cake!

Make a wish!

Minute To Win It games in the garage!

What a nutcase!

So blessed to have great friends!

Proud Papa...

...and Nana.

Rebecca, we are so amazed at the young lady you have grown into! You are so beautiful on the outside, but more importantly, you are beautiful on the inside. We can't wait to see what plan God has for your life!

Celebrations...

2011-02-10T21:25:00.000-05:00

There is so much to celebrate today! Praise be to God --- Mason and Owen came through surgery today like champs. Andrew also had a cath that went smoothly. Tina was an awesome advocate for CHD Awareness Week on a local news show. Rebecca made the softball team. The VARSITY softball team!

And this...

No matter how old I get, my family always makes it a special day.
Thank you Bill, Rebecca, and Zach! I love you!

CHD Awareness Week

2011-02-06T21:23:00.000-05:00

Feb. 7-14 is CHD Awareness week. A time to make others aware of what we heart families live with day in and day out. A time to educate the public about just how common CHD is and just how little money actually goes toward CHD research. A time to advocate for our cardiac kids. A time to show just how much passion we have about making a difference for the 1 in 100 babies that are born with CHD.

I have been trying to figure out how our family can make a difference. One heart buddy, Logan, and his family operate "Cuddles From the Heart" --- they make and collect blankets which they donate to CHD patients in the hospital. Logan's mom, Stef, is an awesome advocate for CHD Awareness, using her blog this week to present testimonies of heart moms and dads.

Anna Grace and her Mom and Dad (Tina and Brian) are going to be on a local news show this Thursday sharing about CHDs and how it has affected their life. How exciting! I already have it set to record! Tina has also established a Heart Moms' Night Out once a month in our area. What a blessing!
Another heart buddy, Derrick, and his family make BraveHeart Baskets to give to cardiac kids when they are in the hospital. As a matter of fact, Zach got one when he had his last surgery. It was like Christmas morning!

Zach with one of the gifts from his basket - the blue elephant

Saturday, Derrick threw a CHD Pancake Breakfast at Fatz in Columbia. This Saturday, he is throwing another pancake breakfast at the Fatz in Easley. He is one busy boy! The proceeds will help them make more BraveHeart Baskets. How awesome is that?!

How can our family make a difference for CHD Awareness week? I think our first step will be to get some tickets to that pancake breakfast and to eat some yummy pancakes!

Blogger's block

2011-01-23T14:47:00.000-05:00

I seem to have a bit of writer's block lately --- or should we call it blogger's block? Or maybe I am just terribly lazy... or terribly busy... or all of the above! Anyway, I am still here and I am still keeping up with all of our heart buddies. I'm just not posting for some reason.

The only recent news that I have to share is that we rescheduled Zach's heart cath to the end of our Spring Break on March 31. They have to close the fenestration that they made during the Fontan. I had originally scheduled it around a school holiday so I would only have to miss 1 day of work, but with all the snowdays that we have to make up, we now have to go to school then. So, we will take a little "vacation" to Charleston during Spring Break. Zach is already anxious about it. He keeps asking, "When do we go to MUSC?" Of course, he has no sense of time, so I just tell him that it will be a long way off. Then, he will remind me that, "We need to go to that playroom!". It's good to know that he remembers how much fun the Atrium is!

Rebecca and her best friend, Sarah asked me to go out in the freezing cold yesterday afternoon to take some pictures of them together. I thought they turned out pretty good...

Of course, Zach had to get in on the action!

The Blizzard of Jan. 2011

2011-01-11T21:09:00.000-05:00

It started sometime Monday in the wee hours of the morning and snowed all day long! We got about 5-6 inches of snow in all and some sleet late in the afternoon. It was pretty cold and there was quite a biting breeze. Nonetheless, we bundled up and braved the elements. We played in the yard for a while, but the snow was very dry and powdery - we could not even make decent snowballs or a snowman!

We finally decided to go sledding at the school across the road from our neighborhood. Once the sled packed the snow down the sledding was pretty good.

Wipeout!!

After sledding down the hill a few times, all Zach wanted to do was get in the way of those of us that wanted to sled. He would run and try to jump in the way of the sled every time we would try. Stinker! He just didn't understand that this would result in injury, I guess. His other favorite thing to do was to roll down the hill. No wonder he was so worn out! Bill had to carry Zach back to the house - he wouldn't even ride in the sled. When we finally got back home, Z had had enough! Cold, tired, and hungry!

We did not go out today at all. The snow had a layer of ice on top which made walking difficult. I think we all have a bit of cabin fever by now. School is already canceled for Wed. too! I hope we will be able to get out tomorrow... at least for a little while.

Blogging question

2011-01-09T13:52:00.000-05:00

OK all you blogging experts out there... how do I get my header to be centered? I never recall having a problem with this before but the past couple of times I have updated the blog, my header is left-justified instead of being centered. This type of thing drives me and my Type A personality crazy!

Thanks for any help you can give!

Sure hope it isn't catching...

2011-01-06T21:08:00.001-05:00

There has been some sort of epidemic going around our little CHD community lately. The long-lasting symptoms include vomitting in some cases, moodiness, strange eating habits, and extreme fatigue. I sure hope it isn't contagious! This 41 year old mom (me, I mean) wouldn't want to catch the same bug that Shannon, Jesse, Jen, Victoria, and Mandy have caught!

Our family is so excited for these families. We offer heartfelt congratulations and many, many prayers for all of you!

Christmas 2010 Update... finally!

2011-01-02T15:54:00.000-05:00

Our Christmas break has been so fun! I have been so busy that I have barely been able to keep up with everyone else's blogs, nevermind updating our own. I was ashamed to pull ours up with the Fall theme still on it. Changing the look of the blog is a time-consuming process for me, the perfectionist that I am. Nonetheless, here is the new look. It may have to last until summer!

Christmas in our family is celebrated in stages. You'll see what I mean...

This is Round 1 with Bill's family at our house...

The moms and the kids at the kitchen table

Bill's mom, Nana Shirley with Debra, Mary, and Bill

We love to get together with our cousins!

Time to open presents!

Couldn't get him to sit still long enough to wrap him so we just put a big bow on top!

Zach and cousin Paige playing with his favorite gift - Toy Story 3 Landfill!

Round 2 at Nana Cherryl's and Papa DR's...

Sweet!

Nana loves it!

Stylin'!

Oh, boy!

Hugs for Papa...

...and Nana!

Gettin' ready for Santa on Christmas Eve...

Decorating cookies for Santa... or eating them?

More sprinkles?

Cookies and milk for Santa and carrots and broccoli for his reindeer!

Round 3 at home Christmas morning...

Look, they were here!

Score!

Dr. Zach got a surgeon's kit, complete with scrubs!

Santa brought Zach a "camote control car"!

Sissy's favorite team!

Mommy can have her coffee on the way to work!

Mommy got Zach a neat write-on-wipe-off book to practice his letters and numbers.

Round 4 at Grandma Jan's on Christmas afternoon...
Well, we didn't actually take any pictures somehow... BUT we did get to see a white Christmas for the first time! So, this is what we woke up to the day after Christmas...

Let it snow, let it snow, let it snow! In all, we had about 6 inches!

Beautiful!

Rebecca making a snow angel

Rebecca and my mom

Daddy and Zach trying to find a steep enough hill to sled on

Gotta make a snowman!

Can you see the HUGE snowball headed for Rebecca's head?

Zach is getting in on the fun now!

After a couple of days at my mom's we went to The Great Wolf Lodge. We had a great time playing in the water park and shopping! I have a couple of pictures on my phone that I have to download and post.

We hope you had a wonderful Christmas too!

Merry Christmas!!!

2010-12-25T00:28:00.000-05:00

From our family to yours...

Have a blessed Christmas and Happy New Year!

Prayers needed for a heart baby

2010-12-10T22:45:00.000-05:00

Please lift up Mason, his mom, Neysa, and his dad, Todd. Mason was rushed by private jet to MUSC last night and may still be in surgery right now. You can read about his battle here.

An Update and Some Important Dates

2010-12-05T14:15:00.000-05:00

Merry Christmas!!! I can't believe it is already December! I have a good start on my Christmas shopping - how about you?

We finished up most of our decorating last weekend, despite most of us being sick. Zach hung the first ornament on the tree, gave Daddy a huge hug and said "It's Christmas Time!!!" So cute! He hung maybe 2 more ornaments and lost interest. Oh, well. They say their attention span about equals their age in minutes, so that's about par for the course!

Ta-da!

Here's our hearth decor, which Zach has destroyed for the most part. He thinks it's all for him to play with.

Rebecca with her best friend, Sarah, in front of Rebecca's new Christmas tree she put up in her room

We just need to put out our reindeer, snowman, and lighted trees out front. It has been cold and/or rainy this week, so we haven't been able to do it yet. We also need to take our Christmas picture so I can get our Christmas cards ready to go out.

We have a couple of important dates on our calendar. First, Zach has a speech evaluation on Jan. 4. He talks with quite a lisp still and is not saying a lot of blended sounds. We'll just have to see what they say.

Also, Zach will have a heart cath done March 17 at MUSC. They need to close the fenestration that they created during the Fontan and I suppose they will have a look around to make sure everything is working well, too. Even though I dread going through another procedure, at least we know what to expect from Zach. We pray we will not have any surprises.

The Funky Heart

2010-11-29T21:31:00.000-05:00

Steve Catoe, aka The Funky Heart. A heart warrior. A hero in our CHD community. An inspiration to moms and dads of Cardiac Kids. A blogger who researched and shared important information about this disease we are all fighting. A devoted advocate in the fight against CHDs.

Steve passed away last night. I don't know any details. I just know that we will all miss Steve so much.

Please pray for his family during this difficult time.

Mystery Bug - Be Gone!!!

2010-11-27T10:56:00.000-05:00

We really thought Zach was on the mend after my last post but he started coughing more and more on Thursday --- and had a fever over 102 Thursday evening. We called and talked to the answering service and the doctor advised that if we could not get his fever down to take him into the ER. Fortunately, we were able to get it down with Tylenol. Daddy slept with Zach in the recliner so he could be sitting up more.

Friday morning we were on the phone at 8am and got an early appointment. The doctor we saw always seems to listen more aggressively to their lungs than any of the other doctors --- he had helped Rebecca last Fall when she had allergies with a cough that would not quit. We may switch and start seeing him regularly. Anyway, he could hear something going on in Zach's left lung and bronchial area. They tested for RSV (another nose swab) and tested for walking pnumonia (another finger stick) but they were both negative. Nonetheless, he prescribed Azithromax, a steroid, and breathing treatments (he cleared this with our cardiologist first).

Coughing MORE is not Zach's idea of getting better --- unfortunately that is exactly what these meds are doing. Helping him get the gunk up and out. Bless his heart, he could not get to sleep for coughing last night. We tried him sleeping in our room. He had coughing fit after coughing fit so daddy took him to the recliner. Still more coughing fits. Did I mention that each coughing fit results in Zach gagging and sometimes hurling? So, Mommy slept on the couch next to the recliner so she could help manage cleanup. Not a fun night.

Oh, and did I mention that now I have a sinus cold??? Sigh.

Despite my whining, we do have so much to be thankful for. God is so good and I am trying to keep an attitude of gratitude. First, I have to go blow my nose.

We are getting ready to get all the Christmas decor down from the attic. Zach keeps asking when we are going to put up the tree, so maybe the excitement will help him feel better. Pictures later of our progress...

Good News - Bad News

2010-11-23T19:17:00.001-05:00

The Good News: Zach's cardiology checkup was great! He was 31.5 lbs, 39" tall, pulse ox 93, bp good, and echo good. Dr. R. said his heart looks great! His fenestration (a hole they made during surgery that acts as a "pop-off valve" ) is still open, so Dr. R. is putting in the request to Charleston for a heart cath in March. They will place a coil to close it and have a look around to make sure all is well.

The best part of the appointment was when Dr. R. said "We are going to stop the Lasix." Woo hoo!!! I am so glad to get rid of that. In case you don't know, Lasix is a diruetic. Diruetics and preschoolers do not go well together. Basically, when we give it to him, we have to stay home for the next 2 hours so he can go tee-tee every 15-20 minutes. Trying to get a 4 year old to stop playing every 15 minutes to go potty results in lots of complaints. Dealing with accidents during this 2 hour period has been frustrating. Hopefully, he will do well off of it and we can be lasix-free from now on!

The Bad News: We thought Zach was on the mend, but he spiked a fever again this afternoon. He also has a bit of a cough. Daddy promptly called and got an appointment at the pediatrician. They tested for strep (negative), flu (negative), AND pricked his finger (white count normal). Poor guy! They are culturing the blood and strep swab.

So, we are not sure what is going on. All I know is that this little bug that's causing him to feel so bad has overstayed its welcome. We have places to be and people to see and TURKEY to eat!

Hope your Thanksgiving is full of blessings!

Thanksgiving Festivities... unless the sickies have invaded

2010-11-21T13:16:00.001-05:00

Bill got to go to Zach's preschool on Thursday for their Thanksgiving dinner and program. Zach's class sang "Every Turkey Can Tango" and acted out the story of the pilgrims and the Indians on the first Thanksgiving. They had a great time!

Here's the place setting that each child made

Zach (the one with his shirt pulled up!) is showing off how thankful he is to be a CHD Survivor

Look at all the desserts!

This morning before church, Zach did not want his breakfast. This has become more and more common on school mornings and we often take it in the car with us for him to eat on the way. Toward the end of children's church, he started acting like he didn't feel good and sure enough, after we got home, he started running a fever. His tummy has been a little upset, too. Please pray that this is just one of those short-lived bugs.

While I'm on the subject, can anyone recommend a really good thermometer? I bought a temple-read thermometer from Walgreen's but it doesn't seem to be reliable --- I can take his temp several times and get several different results. I know he has a fever because I can feel that he's hot. I just like to keep tabs on how high it is.

Some other prayer requests for our family...

Zach goes to the cardiologist on Tuesday for a checkup.
Zach has an assessment, also on Tuesday, for his TEFRA (Medicaid) to see if he still qualifies for benefits. I am nervous about this because we could be denied and have to go through the appeal process. Anyone have experience with this? I don't know if it differs from state to state?
We are supposed to travel to have Thanksgiving with Bill's family if everyone is well, so please pray for good health.

We are thankful for your faithful prayers!

Good Ole Fashioned Fun

2010-11-08T21:39:00.000-05:00

Did you ever do this as a child?

There's nothing like a simple cardboard box, big or small, to entertain a child, big or small, for hours on end... My two children actually played together in this box (yes, it's in the middle of our living room!) for about 30 minutes without any fussing or fighting! I think that might be a record!

Snips and snails and puppy dog tails... and WORMS!

2010-10-30T10:17:00.001-04:00

THIS is what little boys are made of...

For their Halloween party yesterday, Zach's VERY wonderful, VERY brave preschool teacher, Mrs. Amy filled their table (that is usually filled with beans or rice or sand or occasionally water) with potting soil and WORMS! LIVE ONES! EWWWWW!!! The little boys in the class LOVED it! The girls squealed!

Of course, Zach wouldn't have anything to do with wearing his costume to school for the party --- a Clemson football uniform (CarolinaCarters, I know you'll love that!). We put on his camo sweats in the hopes that he would look like a hunter or an army man. Maybe he'll actually wear his costume for Halloween?

Prayer request

2010-10-27T22:15:00.001-04:00

Please be in prayer for some good friends of ours --- The Williamsons --- whose 3 year old son, Brice will have heart surgery Thursday morning at 7:30am in Atlanta. They recently found that he has some extra tissue near a valve inside his heart. Please pray for everything to go smoothly, for pain management for Brice, and for peace and comfort for his mom and dad, Shane and Angel.

You can follow him tomorrow at http://www.caringbridge.org/visit/shanewilliamson --- feel free to leave them some words of encouragement.

Thank you for your faithful prayers!

It's a slippery slope...

2010-10-24T14:18:00.001-04:00

Every once in a while, my mind wanders into some dangerous territory and I allow myself to dwell on certain questions that haunt me...

"Will kids pick on Zach as he gets older because of his health condition?"
"Will he 'fit in' when he is a teenager?"
"Will he be physically able to participate in PE?"
"Will he be physically able to play on a sports team when he is older?"
"Will he have to have more surgery?"
"What will Zach's life be like as an adult with CHD?"
"Will he be sickly?"
"Will he be able to work or will he have to go on disabilty?"

Once I allow them into my mind, these questions won't leave me alone. They peck around inside my head and bring me down. When I allow myself to ponder these things... when I open that door just a crack, more negative thoughts and more questions force their way in. I find that once I start thinking, I cannot stop. The negative thoughts take root in my mind and grow like an aggressive vine, wrapping chutes around every positive thought... smothering... choking. These thoughts lead down a very dark path.

These are the things I must turn to when my mind gets carried away.

Truth is what I need to dwell on when I start down that slippery slope. Truth uproots that deadly vine. Truth shines light into dark places. The Truth is that Zach has done incredibly well in his 4 1/2 years despite his medical diagnosis. There is no reason to believe that he won't be able to do whatever he sets his mind to.

"Then you will know the truth, and the truth will set you free." John 8:32

Faith forces me to change my focus from these worldly troubles and "turn my eyes upon Jesus." Jesus is Zach's Great Physician. Jesus is Sovereign. Jesus has a plan for Zach's life and will equip him and us to live it to the fullest. If we have Faith.

"He replied, "You of little faith, why are you so afraid?" Then he got up and rebuked the winds and the waves, and it was completely calm." Matthew 8:26

Hope keeps out those negative thoughts and searing questions. Hope allows us to dream big for our Little Heart. Hope reminds us that awareness and advocacy lead to research and research leads to improved healthcare for CHDers and improved healthcare leads to a better life.

Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

Truth, Faith, and Hope cause me to turn from the negative and seek the positive... to turn from what the devil would have me focus on to the abundant life that Jesus intends. For Zach's sake.

What helps you fight off the questions that haunt you?

Craziness...

2010-10-17T21:08:00.000-04:00

It has been so long since I have posted! I miss blogging. I miss recording all the funny things Rebecca and Zach do and say. I have still been reading up on all of our Heart Buddies, but I haven't had time to sit down and write, nevermind taking and downloading pictures! Bad, bad Mommy!

This new way of life feels like craziness! I am exhausted --- do working moms ever get enough rest? Our evenings are filled with ~~fixing dinner~~ picking up dinner somewhere, doing laundry, helping with homework (btw, is it my imagination, or is 7th grade homework harder now than when I was in 7th grade?), making lunches for the next day, ironing clothes for the next day, bathing one little wild man (thankfully, Bec can take care of all that for herself!), and hopefully getting to bed at a decent hour. Whew! Then it all starts over again the next morning!

I do love what I'm doing, though. I have a great faculty and administration to work with. I feel like I am accomplishing a lot, although there is still so much to do! This week will be extra exciting --- we are having a Book Fair! It ought to be interesting!!!

And Zach continues to LOVE 4K. He is learning so much! It's fun to hear him share the songs they sang at "'cool to-day" (gotta work on those S's!). He is learning about his letters and the sounds they make. Friday they made chocolate chip cookies. This week, they go on another field trip - this time to the pumpkin patch!

Health-wise, Zach is doing wonderfully. He goes to the dentist Tuesday. Hopefully he will let them really clean his teeth this time. He's not crazy about them doing things to him. I wonder where that comes from??? He's not gonna like it but he's gonna get his flu shot Tuesday too. He doesn't go back to the cardiologist until sometime in November.

Friday night, we attended a reunion of the 1990 Union High School State Championship team. Bill got to reminisce with coaches and players. Zach and Rebecca got to run and play in the end zone with the other kids.

FCA ministers to coaches wives through a group called Bench Backers. So Saturday, we went to an annual picnic with a bunch of coaches and their families. We have it at this beautiful horse farm - the wonderful owners allow the kids to ride horses, take everyone on a hayride, and have a bonfire for roasting marshmallows.

The only way Zach was having anything to do with horse back riding was to get Daddy up there with him. I asked him why he didn't want to ride the horse and he said "I fink he gonna frow me off!"

This year they had a special treat for us - Redneck Sledding! Lots of fun!

Look at that smile!

The big kids playing football --- that's Rebecca the Running Back on the right.

The hayride wagon

Hopefully it won't be another month before I post again. Just know that we're not MIA --- we're still here!

Wordless Wednesday: What We've Been Up To This Week...

2010-09-22T21:21:00.000-04:00

Living Proof...

2010-09-18T22:14:00.001-04:00

Here's living proof that the Fontan Completion does indeed give the CHD survivor MORE energy...

Hurricane Zach wreaking havoc on the Owens household

...which just may lead to this...

Zach knocked out on the floor of the hallway outside his bedroom

One thing's for sure, being at work all day sure does make it difficult to get important things done, like grocery shopping, going to doctor's appointments, and blogging! It's a good thing that Bill and I work so well together as a team to get everything taken care of... except the blogging. Sorry it's been so long since our last update!

Zach continues to do well in preschool. He was so excited the other day because he got to be the teacher's helper for the day. He got to help carry her clipboard and hand out pencil boxes. He has been learning a lot about the letters A, B, H, Z, W and has been singing lots of new songs that they have learned. This week on Tuesday he goes back to cardio for a checkup and on Wednesday, he will go to the apple farm with his class! We are so thankful to God that he is doing well!

Rebecca only has a couple of weeks left in her volleyball season --- she will get to start in Monday's match. She has fallen in love with the game and I hope to get some good pictures of her in action.

I am loving my job! I still have a lot of work to do to get my library organized, though. I am trying not to get frustrated and impatient. I know it will take a while, and all the hard work will be so worth it!

Celebrate!

2010-08-31T21:58:00.000-04:00

Just a quick update to let everyone know that...

Zach is no longer on a fat-free diet... AND the doctor released Zach from all activity restrictions which means he can finally enjoy the playground at preschool! Hooray!

I have to admit that the fat-free diet hasn't been all bad. I think I have lost a little weight without even trying! The problem is, so has Zach!

Bill sent me the picture below today after Zach's marathon cardiology visit (x-ray AND echo, and all the other usual stuff). As they were headed to Zach's preschool, Zach asked if they could stop at Zaxby's. Dad told him they were not open. Zach thought about it a second and said, "OK, we can go to Chick-a lay!"

See the box of Chick Fil A chicken nuggets? See Zach's BIG smile?

This is one happy boy with a good lookin' Heart Zipper!

Prayers needed...

2010-08-29T18:20:00.004-04:00

What a privilege it is to pray for our fellow heart families...

Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours. Mark 11:24

Be joyful in hope, patient in affliction, faithful in prayer. Romans 12:12

And the prayer offered in faith will make the sick person well; the Lord will raise him up. James 5:15

Two more cardiac kids are going to make their appearance very soon. That means that two more families will jump onto this CHD rollercoaster. Two more families will be turned upside down, twisting and turning, going up and down, just wishing they could stop it all. We veteran heart families have two more chances to lift up prayer for those who will feel overwhelmed as we once did.

The first, Mason, who was diagnosed en utero with Tetrology of Fallot (TOF), was actually due Saturday. Mason's mom will be going to the OB Monday. They could possibly decide to induce, although she does not want that. Please pray for discernment for her doctors as they decide what will be best for him, for a smooth delivery, and for Mason to be stable.

I heard about this second family during an interview on the radio. A member of the Christian group Sanctus Real is about to have his third child, Bowen, who was diagnosed en utero with Hypoplastic Left Heart Syndrome (HLHS). Bowen is due to come in the next couple of weeks I think.

Also, please pray for us as Zach goes back to the cardiologist on Tuesday morning. He will have a chest x-ray to make sure there is no accumulation of fluid left over from surgery. The doctor will let us know if Zach can begin to eat fatty foods again. Zach will be soooooo happy to go get some Chick-Fil-A nuggets! We are also praying that Zach will get rid of the cough that he has had since last week.

Thank you prayer warriors!

Every Heart Has a Story...

2010-08-23T21:32:00.000-04:00

Today my good friend and fellow heart mom, Stef, shown below, is hosting a linking blogging thingy. Not sure what to call it, but it is a great way for heart families to connect and share their heart journeys. It is also a great way to spread awareness of the #1 birth defect in our country - Congenital Heart Defects.

Every heart is different but one thing's for sure... Every heart has a story! For us, we were "adopted" into this world of CHD's.

Just to catch you up, we began the process of adopting Zach about 2 months before he was born. We took his birth mother, Nora, to several doctors appointments, but never knew that there was a problem with his heart. Rewind to April 29, 2006...

Our family a few hours after Zach's birth --- before we knew there was a problem...

Click here to visit and read the rest of this earlier post telling Zach's heart story...

Now, in August of 2010, I am proud to announce that we are post-Fontan and Zach is doing great! He is an amazing boy who is full of life and smiles for everyone he meets. He has started preschool and is learning new things every day. We are blessed.

Alarm Clocks, 4K, and Sniffles

2010-08-22T20:03:00.000-04:00

So, I am finally getting around to blogging about our first day of school. It's been a very hectic week, but a good one!

On Sunday, my sweet family gave me a framed collage to put on my desk. Every time I look at it I feel so loved!

We got Zach an alarm clock to help him get up and get ready for school. We hoped it would help him be excited about getting up at 6am (he's never had to get up early for anything except an occasional early doctor's appointment) and we hoped it would help him to sleep in his room all night rather than coming into our room as he now does every night. So, on Sunday night we set the alarm and put it on his dresser. Lo, and behold, he comes into our room at 2am carrying the alarm clock! Stinker!!!

Monday morning at 5am my alarm clock woke me from a deep sleep. Like Zach, I am not used to having to get up super early, or at least not used to having to be ready and out the door at 6:45am! I have about a 20 minute drive and have to drop Zach off too and be at school by 7:30. Zach wanted to know why it was still dark outside!

\
Here we all are ready for our first day of school! Despite the look on Zach's face he really was awake and in a good mood. A few minutes later he started fussing. Do you see what Zach has in his hand? Cardiac Kid's Breakfast of Champions --- Enalipril!!

Zach did really well going to preschool all week. Bill was able to pick him up after lunch on the first day but he had to stay for pretty much full days for the rest of the week. I was afraid he would be wailing every day but he fussed very little and really seemed to have a good time. He is learning a lot already!

Apparently he hasn't learned to avoid the kids with the snotty noses (heart mom humor!) because he has a little cold. Yesterday we hovered around the tissue box, wiping his little nose every 2 minutes. Today he sounds a little stuffy. Nonetheless, he has felt good and been his usual self. I know sickness is inevitable and I am thankful this hasn't developled into something bad.

So, I guess we will get up and do it all over again starting tomorrow morning!

New member of the cardiac kid club...

2010-08-17T06:31:00.000-04:00

Please lift up some big prayers for the newest member of the cardiac kid club --- baby Joshua, born yesterday with HLHS. He and his family have just hopped on this rollercoaster that we veterans know so well. Right now, he is stable and they are praising God for all the little victories. Check out how he's doing at http://fierceandfiesty.blogspot.com/.

I will post about our first day of school soon... hopefully before mid-semester!

Bok! Bok bok bok BOK!

2010-08-12T14:27:00.002-04:00

You might be wondering about the title of the post. Click below...

The question is...

Just how many ways can you fix chicken???!!!

Hopefully, we only have a couple more weeks on the low fat diet (PTL), but I declare... I cannot wait to go get a big, juicy, dripping cheeseburger! Wherever we go to get that big burger, I'm sure when we ask Zach what he wants to eat, he will say, "Chicken!"

Zach loves to tell everyone, "I am on a fat-free diet!" like it's something to be proud of. Not easy to explain to complete strangers in the grocery store or to the poor girl at Chick Fil A that took our order today (he can eat 1/2 of a grilled chicken sandwich from CFA --- he cannot eat his favorite 6-pack of nuggets). And I'm pretty sure that Zach is the only 4 year old who reads nutrition labels. The other night we were having a snack and I was reading the label on a couple of boxes from the pantry. He said, "Lemme see." He turned the box around to the label and said, "OK, two grams of fat!" Funny Boy!

So, praise the Lord, Zach continues to do well. He still gets tired but we are at that point where an afternoon nap keeps him up at night, so we just deal with a grumpy boy at night and try to get him to bed earlier. We have been trying to adjust his schedule to get him used to getting up early and going to bed early because he starts preschool Monday! He will just go for 1/2 day for a few days this week to allow him to build some more endurance. I am nervous about dropping him off this week and pray that it goes smoothly. We have not been used to getting up and having to be much of anywhere early in the morning so this is a big deal!

Rebecca has been in try-outs for volleyball at her school this week. There are 40 girls trying out for 12-15 spots! We hope she makes it --- I might be biased but I think she is pretty good! I think she is all ready for school --- in middle school a girl's gotta have just the right school supplies and clothes!

Bill has been busy following up from summer FCA camps and gearing up for the new school year. Football season is always busy for him --- lots of ministry opportunities. Zach has been glued to Daddy's side these past few weeks, so we hope we can un-glue him (Zach, I mean) on Monday.

I worked the first three days this week getting my library ready for the start of school. I love the folks that I work with and am really excited! I felt like our kids on their first day of school --- Bill just had to take a picture of me all ready for my first day of work! Notice the sleepy look in my eye and the large mug of coffee?

Thanks for checking in on us!

Cardiology checkup

2010-08-03T20:05:00.000-04:00

Zach's cardiology appointment went well today... except for the part about holding him down to remove... you guessed it --- THE BANDAID!!! The good news is that Dr. Raunikar said that we do not need to keep a bandaid on it anymore. Hallelujah!!!

He weighs 30.3 lbs, is 37.5 inches tall, good bp, good pulse ox at 90-92, EKG and echo looked good. He left him on the same doses of aspirin and enalipril and reduced his lasix to one time a day (Yay!!!). The poor kid gets a lot of exercise running back and forth to the potty after taking that lasix!

The doctor said he can start preschool when school starts but he cannot climb on the outdoor play equipment. I will have to check to see if they can accomodate him in that way. The other issue is that he is still on the fat-free diet until the end of the month, so we will have to provide all his food. You can imagine that this "hovering heart mom" is having a hard time with trusting that someone else will protect him from collisions, climbing, and fat-laden food. I also have to compile a list of symptoms for the preschool staff to look for in order to educate them about his condition. Fortunately, he will be at a preschool about 2 minutes away from my school.

Rebecca will be trying out for volleyball at her school next week. She loves the sport and is pretty good at it, so we are hopeful that she will make the team.

Speaking of school, I can't believe its almost here!!! I have been in my first-year-teacher class this week and will be officially starting next week. I am feeling overwhelmed and anxious but I am really excited to begin this new adventure! We welcome your prayers as we make these adjustments within our family.

Stuck...

2010-07-27T11:18:00.001-04:00

Remember this?

Well, that's the problem. The Band-aid's stuck on Zach.

How is it possible that open heart surgery is a piece of cake compared to changing the bandages on Zach's chest tube incisions? Do you know how hard it is to hold down a screaming 4-year-old --- without hurting him, mind you (I mean we are only 2 weeks post-op) --- and peel off a little-bitty Band-aid? And can it possibly hurt that bad?!!

OK, now I feel a little better. Please share your experiences with this and what to do about it.

Is it possible?

2010-07-23T16:45:00.002-04:00

Can Zach, a.k.a. Flint Lockwood, really be back to normal already? Only 11 days after open heart surgery? He is feeling great (not even taking Tylenol!), sleeping great, and eating great (despite the Fat Free Diet). The only time he feels any pain is if he has to cough or sneeze (just the thought of it makes me cringe). Incredible! I shouldn't be surprised, really. Not with all the prayers that have been lifted up to The Great Physician.

Zach and Daddy laying in the bounce house playing with his bouquet of balloons that our good friends sent him.

Zach had a great visit with the cardiologist this morning. Zach was funny this morning as we headed downstairs for his x-ray. Daddy pointed down the hall and told him we were going to Radiology. Zach said, "No Dad, we hafta go to X-RAY!" When the doctor came in, the first thing Zach said was "I'm on a diet!" Great report: nothing of concern on the chest x-ray, sats were great at 92-94, blood pressure just where it oughtta be. We go back in 2 weeks for another chest x-ray. So now that I don't have anything to worry about heart-wise, I am worried about all these x-rays. Aye-aye-aye --- the life of a heart mom!

I talked to the dietician from MUSC for a little more guidance with our diet. We are VERY limited, but I think I have a good menu planned. I just hope Mr. Picky can hold out for another 5.5 weeks!

So, we are looking forward to a very restful weekend at home. Hopefully next week we will feel like getting out a little at a time. After all, we gotta go see Toy Story 3!

Now, Dorothy, close your eyes and repeat after me...

2010-07-21T22:42:00.000-04:00

There's no place like home.
There's no place like home.
There's no place like home.

There really is no place like home. We got in this evening after swinging by to pick up Rebecca. With all 4 of us under one roof, Zach likes to say, "We are a family!"

Now we can get down to some REAL recovery!

Thank you all for your prayers and encouraging comments --- they carried us through!

Please help carry another heart buddy through. Sam is having the Fontan (the same surgery Zach just had) at MUSC tomorrow morning (Thursday). Please lift him and his family up.

If you'll excuse me, I'm going to sleep in MY bed!

Tubeless and fancy free!

2010-07-20T13:57:00.000-04:00

I can't believe it!!! NO MORE TUBES!!! They just removed the 2 remaining chest tubes and Zach is sitting up in bed eating his lunch! Hallelujah!!! We have to hang out until sometime tomorrow to make sure there is no fluid accumulating (they will do another chest xray and echo at some point). If all is well, we will be packing up to go home tomorrow! I keep reminding myself... Don't count your chickens until they are hatched.

In the meantime, here's a video I shot of Zach this morning. Just to prove how good he's been feeling.

A Day in Pictures...

2010-07-19T19:52:00.001-04:00

After getting over his initial grumpiness, our day ended up being pretty good. We had some visitors --- so sweet of my good friend and fellow librarian, Susan and her son William to come and visit while they were down visiting family. We also spent some time with our new friends Debby and Melissa. We are so blessed!

Here are a few pictures from today.

In the bed but still in constant motion!

The Atrium is a wonderful place!! We were able to go 3 times today. Zach ought to sleep well tonight!

A beautiful view of the city from the Atrium

Playing a little Wii --- he's either concentrating REALLY hard or very tired. Maybe both!

Cheers!

Dad's idea of a turkey sandwich. I don't think you are supposed to put the WHOLE turkey on there, Dad!

Now for some REAL food (well, fat-free cafeteria food instead of plastic food)! I think Zach finally has his appetite back!

THE WALL

2010-07-19T09:55:00.000-04:00

We have hit the wall. 7 days of people messing with Flint Lockwood and he's had enough. When I asked him about going to the playroom, he said "No, I want to go home." Blood Pressure? NO WAY! Temperature? NO! NO! NO! Medicine? FORGET IT! GO AWAY!

Thank you for your prayers. Please pray for cooperation from the boy. He needs to get up so we can get the drainage to go down some more. It has leveled off. He still has some fluid around his lungs, too so pray he can pee it off.

As Dorothy says, "There's no place like home... there's no place like home..."

Still hangin' out in 7C

2010-07-18T13:26:00.000-04:00

Zach is doing so much better as you can see! Saturday morning he still wasn't feeling good at all (hence the prayer request for a "movement"). Praises! He had some success on the potty that alleviated his discomfort for the time being. We got to go to the playroom twice yesterday and took a walk in the hall last night. This morning he went to the playroom for about 45 minutes and did great. We are headed back to the playroom at 2pm. One of his favorite things to do is to doctor on the babies.

They said his chest x-ray still shows some fluid around one lung so they want to leave the chest tubes in until at least tomorrow. He will have another x-ray in the morning. It is just a waiting game.

Zach likes to "mess" with the doctors and nurses, so he says, "I not Zach. I Flint Lockwood." (from Cloudy with a Chance of Meatballs. If you haven't seen it, get it. It's a cute movie) So one of his nurses put his name on the door and printed out a picture of Flint. Funny Boy!!!

In the meantime, we refer often to our roadmap back home. Just before surgery, I checked out The Wizard of Oz and Zach fell in love with it. I ended up buying it and he has watched it about 100 times. When we were in ICU, they suggested making a chart to help Zach to cooperate a little bit more. I started drawing this roadmap that would help Zach see all that we need to do to get back home. You can sing it, "Follow the Yellow Brick Road!"

We have been so blessed by all the notes, emails, and calls. Thank you for your encouragement and support. God is so good and His Holy Spirit has truly been here to comfort and strengthen us. Please continue to pray for Zach to be able to eat (this fat-free diet is tricky) so he can regain some strength, for pain management, for the drainage to taper off, to stay free of any infection, and to be able to go potty again (not necessarily in that order!)

Pray for what???

2010-07-17T08:46:00.000-04:00

I can't believe I'm posting this. Zach will be mortified one day when he knows.

Please pray for Zach to be able to go. You know... poop. He still hasn't been able to go since surgery. 5 days ago. Enough to make anyone miserable. Pain meds don't help the situation but they are necessary.

We had a great morning yesterday and then they took out his middle chest tube and pacing wires. He slept finally for a few minutes and then woke up in excruciating pain. It is so hard to see your child like that and not be able to do anything about it.

We are hoping for a better day --- for him to feel like getting up to play. That will be the best medicine of all.

Life is good

2010-07-16T13:05:00.000-04:00

Life is good on 7C. Zach is in much better spirits, although he is still ornery at times. He just wouldn't be himself if he weren't. I think he is learning how to tell us about what he is feeling, and he is using words rather than tantrums to express it (thank God!).

He got to go to the playroom yesterday evening after we moved. That is some really good medicine!!! He was pretty uncomfortable, but getting up and moving around is all a part of getting better.

Zach in the wagon - tubes and wires in tow

Zach fixing me a cheeseburger

Lookout Picasso! You've got some competition! He was really worn out here and starting to hurt

Here's a funny that this picture reminded me of. Yesterday when the doctor was examining him, Zach held up his foot and said, "I think you need to smell my foot!" What a funny boy!

They will be removing his middle chest tube in a few minutes I hope, so he will be much more comfortable. The middle tube is much stiffer than the other two and usually causes much more pain than the other two. They will give him some happy drugs for the procedure and he is ready for a nap, so I hope he will be able to get some rest.

The doctor told Zach that he had to go to the playroom and take his medicine, so hopefully he will heed doctor's orders. The doctor said there is no way to predict how long the drainage will take --- could be 3 days or 8 days. Quite a difference there. We'll take 3, thank you very much. Thank you for your prayers for a quick recovery.

Thanks for your prayers!

2010-07-15T14:40:00.000-04:00

Just a quick note to let you know that Zach's disposition is much better (as of right now!) I could kiss a couple of nurses who advised us to step out for a while and get some lunch while they got him calmed down and playing. He seems like a different child! Thank you Lord for answering the prayers of our faithful friends!

We are trying to wait patiently to be moved to a room.

Please keep the other families on the unit in your prayers. We met one family who has been in the PCICU for 4 months, since the birth of their daughter. They have relocated here to Charleston with their 3 year old son. Another baby just turned 2 weeks old and is having a hard time as he recovers from his first surgery. Please lift them up.

My sister-in-law has flown out to be with her family as her father, Dick Austin, is very sick in the hospital. Please pray for peace, comfort and healing.

Will update later if possible!

Keep praying!

2010-07-15T10:26:00.000-04:00

So sorry that I haven't been able to update much. Zach demands (not really a strong enough word) a lot of attention, so when I get a break and can get to a computer I have to take care of necessities like eating and using the facilities (neither of which we can do while in PCICU).

I just realized that I never updated that they did not move us to a room yesterday. They said he had not gotten rid of enough of the fluid in his lungs yet. We are going to be moved sometime today. They are full on the floor but discharging one, so I figure it will be later this afternoon before they have our room ready. It will not be soon enough.

So far, surgery has been a piece of cake in comparison to dealing with a 4-year-old. He so desperately needs to feel some sense of being in control but there are very few things he can control right now. We are having some episodes that I think are what they call "ICU psychosis." We need a change of scenery and a remote control for the TV that works. What more control does a male need? So, please pray for him to behave and be easier to get along with.

He has developed chylous drainage, so we are starting on a fat-free diet. I'm not even going to think about how Zach will react at not being able to eat chicken nuggets. That would be another prayer request --- that he will be satisfied with what they will allow him to eat and that his chylous drainage would resolve quickly.

Gotta run and get back to help Bill as he deals with our Little Napoleon. Thanks for checking on us!

Baby steps

2010-07-14T11:37:00.000-04:00

Last night after I made the post about the better mood, I returned to find Daddy struggling with a very, very grumpy Zach. He had all of his monitors beeping and beeping because he was so upset (heart rate up = blood pressure up = oxygen sats down = lots of beeping). Not pretty music to hear. The bad news is that Versed is not knocking him out --- its only making him a really mean drunk.

Here's a funny... one time yesterday, something started beeping and Zach slapped his hand across his forehead and said, "Oh, what now???"

At around 9:00pm we turned a corner and Zach conked out. We left to go back to "Mrs. D's Hotel" (as Zach calls it) to get some much needed sleep. We were a little apprehensive about leaving him, but apparently he slept all night. I think they finally got on top of the pain, making him much more comfortable. They also started giving him Benedryl for the itching which helped.

He woke up around 8:00am and actually smiled a couple of times! I can't tell you how much it blesses my heart to see that first post-op smile! That is good medicine for Mommy! He at a breakfast of Cheerios, bacon, fruit, and apple juice. Please pray for more smiles. I got a picture of him smiling but I have no way to download it yet. I hope to post some pictures soon.

In rounds, the doctor said that they will remove several of his tethers today and we will move to a room on the floor later. They said his lungs still look cloudy, but that will get better as he starts moving around more today and tt-ing and coughing more. So far his drainage output has been good and they will be taking out the one in the middle, which will make Zach more comfortable as this one is a very stiff tube. His output will have to decrease a lot before they will remove the other two chest tubes. Now that he is eating we will have to see if he will develop Chlyothorax or not, which is where the fats that he takes in cannot get drained away and collect in the chest cavity. Please pray that his body will be able to do its job on the drainage.

Thanks for all your prayers and encouragement! Mom and Dad are holding up pretty well but when they put us in a room, one of us will be staying with him at night. So, pray for good rest for us as we take turns doing duty.

Progress and maybe a better mood

2010-07-13T19:47:00.000-04:00

Let me start out by saying that God has showered us with blessings --- as hard as this has been so far, I know that things could be way worse. Thank you for your prayers so far!

The only complication we are dealing with right now is the wet lungs. They are giving him a diuretic, so that will help him get rid of the fluid. He is on various pain meds (toridol, tylenol, morphine, and oxycodone I think) and he actually seemed more comfortable this afternoon as he slept. He ate a little bit, too. We are praying for a restful night!

We may be moved out to the floor tomorrow. He is slowly losing tubes and wires. He removed an IV this morning himself! Not too cool since they will have to replace it sometime soon. They also removed his foley, so I know that is more comfortable for him. He may freak out at tt-ing in his pull-up, though.

Thanks for checking in on us!

Don't you love technology?

2010-07-13T10:49:00.000-04:00

So sorry for the gobbledy-goop that posted last night! Don't know what happened there...

So, the docs say that Zach is doing really well (kinda hard to tell it from the picture, huh?). He got off the vent really quick last night around supper time, I think. He didn't waste any time letting everyone know what was on his mind. Our nurse gave him a moistened mouth swab (little sponge on a stick) and he sucked the water out of it. That reminded him of something...

"I want a sucker... from the bank! Just go get me the van so I can drive to the bank!!! Now!!!"

He went on and on about that for a while. Then he said he wanted apple juice. Well, they like to go very slowly after surgery so we don't end up with a sick tummy. We moved to ice chips and then apple juice about 11:00pm or so. That appeased him enough that we were able to slip out and go back to the house for some rest. The nurse encouraged us to do so and I am really glad. We slept for about 6 good hours. Zach on the other hand slept about 2. His poor nurse! He is just so restless and uncooperative and in pain and itching (from the morphine) and "wants to go home now!!!"

Please pray for a few things:

Zach has "wet lungs" which is normal but he needs to exercise his lungs and get rid of those fluids. It is causing him to run a fever which I'm sure is not helping him feel any better.
pain management is a delicate dance. Pray they can find just the right combo of meds for Zach to be confortable.
Pray that once he is comfortable he will be more cooperative.
Pray that he can rest (everytime we mention sleep, nap, or rest he says "no, no, no, I don't want to sleep!)

There are not enough thanks for the prayers that are sustaining us now! Keep em coming!

Soooo sleepy!

2010-07-12T15:09:00.000-04:00

We went in to see Zach for just a few minutes. The cardiologist said he looks great! He is starting to wake little by little. When he heard our voices he would turn his head but then drift back off to sleep. As he gets rid of the anesthesia and wakes up a little more they will get him off of the vent (remove the breathing tube), probably later tonight sometime.

We are getting ready to go back in and we can stay the rest of the day. Bill may stay with him tonight since we are not sure how he'll be as he wakes up during the night. He will want to know that Mommy or Daddy are there for sure.

Keep those prayer coming!

We are officially post-op!

2010-07-12T12:36:00.000-04:00

We just met with Dr. Bradley and everything went smoothly. We are going to get some lunch and then will get to see him in about an hour. I am crying tears of joy! Praise the Lord!

Update # 4 12:10pm

2010-07-12T12:12:00.000-04:00

They are about to take Zach to PCICU. Dr Bradley will be here to let us know all the details in a few minutes. I'll post again when I can. Keep praying as they get Zach settled in PCICU --- as they get everything stablized, begin pain management, and getting him off the breathing machine later tonight.

Update #3 11:18am

2010-07-12T11:27:00.000-04:00

Just got a third update --- Zach is already off of the heart lung machine! Praise the Lord!!! They said they hope to be over to the PCICU (Ped. Cardiac Intensive Care Unit) within the hour. I guess Dr. Bradley will be out to talk to us then.
Thank you for your fervent prayers! We feel them surrounding us and strengthening us!
Heart hugs,
Pam and Bill

2010-07-12T10:13:00.001-04:00

Update 2 10:07 All is well. on heart and lung bypass now thanks for your prayers
**Pam**

2010-07-12T09:59:00.001-04:00

Update 1 905 All is going well so far should have a second update soon
**Pam**

Look out MUSC, here we come!

2010-07-11T08:58:00.001-04:00

Someone really should call ahead and warn the docs and nurses at MUSC that Zach is about to crash their party. The wildman is about to enter the building! The BIGGEST flirt in the world is about to work his magic! They might never be the same...

We have made the most of our weekend at home. We spent some time trying to prepare Zach for what he's getting ready to experience. Anyone that knows Zach knows that sitting in one place to play with anything for more than 2 seconds does not happen, so getting him to listen and doctor on the doll they sent home with us is like trying to hit a moving target.

I apologize for the lovely picture quality here --- this was taken with a cell phone

Zach has decided, "I don't want to go to Chwalstron. I just stay here." Well that's the end of that discussion. Who can blame him, wanting to stay here when he has had so much fun? Look at what he has been doing...

This is an inflatable bouncy thing (yes, in our living room!) that we have had up to entertain Zach for the past week. He discovered, while I was occupied in another part of the house, that he could flip it over, propped on our ottoman, climb up on the ottoman, and slide down! Pretty ingenious, I have to admit! We've been calling him MacGyver! We just hope we don't have to go to the hospital for something different, like a broken bone or something!

We have to pack up, have some lunch and head down the road after lunch. MUSC, here we come!

This is the beautiful Ravenel Bridge between Charleston and Mount Pleasant

Pre-op

2010-07-09T21:25:00.001-04:00

We are home again after a long day at the hospital. We had a hard time deciding about whether to come back home or not, but we figured it would be much easier to entertain Zach at home for the weekend. One thing is for sure, we WILL be purchasing a car DVD player for the trip back!!!

Pre-op went very well and all is clear for surgery on Monday. Praise the Lord! Zach was such a brave boy during his vitals, EKG, echo, chest x-rays, and blood work (the worst of all). He flirted with all the nurses, as usual!

We have to be at the hospital at 5:30am (Ouch!!!) on Monday morning. They will take him back at around 7:30am (after a good dose of versed!) and they expect the surgery to take about 6 hours. He will be in PCICU for 2-3 days then on the floor for several days (a week to 10 days). He loved going to the playroom today, so hopefully he will be ready to get up and around so he can go play.

It is such a blessing to feel the prayers that all our friends and family are lifting up on our behalf. We have also been blessed with a wonderful place to stay while Zach is in the hospital. Our host family is so sweet and their bonus room is a haven.

Thank you for your continued prayers!

Making a list and checking it twice...

2010-07-06T11:22:00.004-04:00

I'm making a to-do list and a packing list and a shopping list. We are getting ready to head to the "Low Country". MUSC. The Medical University of South Carolina. That place that causes a jumble of emotions --- hope, fear, determination, dread, relief, exasperation, compassion, fatigue, gratitude. Right now, the list-making is a way to occupy my mind with some purpose. Otherwise, my mind will carry me away to places that I don't want to be --- places where I fret and worry about that which I cannot control.

Zach asked me this morning, "What'cha doin'?"
"Making a list" I said.
"For what?" he asked.
"Of things to pack for our trip to Charleston" I said.
He thought for a moment. "Where I gonna stay?"
"You're going with Mommy and Daddy" I said.
"Why we going?" he asked.
"So we can go visit Dr. Bradley and some of his friends" I tried to say with some excitement in my voice.
"I don't want to get a shot" Zach said.

Fortunately, he dropped the conversation then and went back to munching on his breakfast.

My heart was so heavy as I thought about picking up the conversation with him later in the week. We must prepare him for what he is about to experience. We must help him to understand that he needs to go through this to make him better. There is no way he can understand it. He must learn to trust Mommy and Daddy to take care of him and do what's best for him. In the same way, my burdened heart must learn to trust the Lord to take care of us and do what's best for us.

It is all about faith.

Psalm 143:1
O LORD, hear my prayer, listen to my cry for mercy; in your faithfulness and righteousness come to my relief.

Psalm 9:10
Those who know your name will trust in you, for you, LORD, have never forsaken those who seek you.

Psalm 28:7
The LORD is my strength and my shield; my heart trusts in him, and I am helped. My heart leaps for joy and I will give thanks to him in song.

Psalm 147:3
He heals the brokenhearted and binds up their wounds.

Matthew 6:34
Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.

1 Peter 5:7
Cast all your anxiety on him because he cares for you.

Dr. Zach

2010-07-04T23:10:00.002-04:00

HAPPY FOURTH OF JULY!!

Tonight, at bedtime I told Zach the story of Independence Day. I know he's only 4, but he's sharp. While our neighbors were noisily shooting fireworks, firecrackers, and Roman Candles, making it sound like the Revolutionary War was going on outside his window, I told him that the Americans fought ........ he said "Why they fight?" He knows that fighting is not right and I didnt try to explain it at bedtime! Regardless, I am so thankful for the freedom that we enjoy in the USA. I want to teach our children to appreciate the sacrifices that people have made for hundereds of years so that we can be free.

Rebecca and I enjoyed a girls weekend of shopping at Concord Mills in North Carolina. We brought Zach a really cool Toy Story 3 pop-up tent. He LOVES it! The problem is he wants the whole family to be in it with him all the time! Sissy decided to take a much needed nap in there and woke up an hour later trapped. Zach had piled pillows in front of all the entrances leaving Sissy to sweat her way through the nap!

We also found the most adorable PJ's at Carter's for Zach. We thought that they would be cute for him to wear in the hospital.

So during supper tonight, he proclaims that he is going to grow up to be a doctor and help people "feel better and give them Lightning McQueen stickers!" He practiced by "doctoring" on the whole family. Wouldn't it be awesome if God decided to use him in that way? Can you imagine the compassion that a "Heart Kiddo" would have for others? That's the kind of doctor I would want to go to!

Checking Daddy's ears

Checking Sissy's eyes

Mommy's heart says "Bounce, Bounce, Bounce!!!"

Bumped

2010-06-29T17:23:00.001-04:00

We got home from our pre-op checkup with our cardiologist this morning to find a message on our machine from MUSC. I thought, "Maybe they just want to confirm everything...". No such luck.

We have been bumped.

They are having to clear the whole schedule next week so they can take care of some emergency cases. My heart goes out to those families. I hadn't ever thought about the fact that we were once one of those emergency cases (when Zach was 3 weeks old and registered a 65 on the pulse oximeter - yikes!) and may have caused some other family the heartache of having to rearrange their schedule. The woman I spoke to indicated that we might not be rescheduled until the end of the month.

I have been so bummed out all day. I know I shouldn't feel this way. I know that God is in control. We have so much to be thankful for... but most do not know how hard it is to prepare for your child's heart surgery. You get yourself all psyched up and ready to get it over with and behind you. You prepare yourself mentally (thinking about what to expect), physically (making arrangements for siblings, planning what to pack), and spiritually (sending out prayer requests). You stay cooped up, avoiding germs. You...

Ooooohhh! Hold on... Phone call from MUSC!

Hallelujah! Our new date is Monday, July 12. I can handle that. We will have to be there for pre-op on Friday, July 9, which is a bit inconvenient since we will be 4 hours from home, but I'm not complaining. Oh, thank you Lord!!!

Thank you for your prayers for Zach as we prepare! Continue to pray for all of us to stay healthy and for Dr. Bradley and his team.

Zach and Daddy wrestling/snuggling on Father's Day

Prayer request for Anna Grace

2010-06-25T10:50:00.000-04:00

I don't think I've mentioned lately that I am so thankful for this faithful community of heart families! I love how we can come together to pray, encourage, share, educate, laugh, and cry together. One of the family is in an all too familiar place right now...

Please pray for The Bentley family today while little Anna Grace is in surgery right now for her Glenn. Everything is going well so far. Please pray for Dr. Bradley and his team.

She was born at MUSC 6 months ago, had her first surgery there before coming home at 1 month old. How fresh those memories are for her mom and dad, making it all the harder to hand her over this morning. She did well (thanks to versed!).

You can follow their updates during their stay at http://baasheepbaa.blogspot.com/ Leave them a note to let them know that they are being lifted up to The Great Physician.

Summertime!

2010-06-18T12:11:00.002-04:00

I thought our blog was in need of a summertime makeover. I love all the FREE stuff that's out there for us bloggers, like Cutest Blog on the Block and Shabby Blogs. What others do you use, bloggers? I haven't gotten brave enough to design my own yet, so I make do with the freebies...

We have been busy these past couple of weeks. Daddy directed a camp for FCA last weekend. He said it was incredible! This is a picture of some of the 200 students at the camp during their Golgotha Experience, following in the footsteps of Christ on the way to His crucifixion. A very meaningful experience!

Rebecca spent last week at the beach with Nana and Papa getting S-P-O-I-L-E-D! They always have a blast shopping, swimming, shopping, eating, and shopping. She got some really cute stuff! Believe it or not, she is leaving Saturday to go to the beach again, this time with one of her friends. We will miss her, but I'm glad she is getting to go.

This week, Rebecca attended our local high school's volleyball camp for girls 6-12 years old. I was planning to upload a short video here, but Blogger has left out that icon on the tool bar for some reason. Anyone know anything about this? Anyway, here's a picture of our girl in action...

So, we have been trying to figure out what's going on with Mr. Zach this week. Since Saturday, he has had some tummy issues. He ran a low-grade fever on Saturday afternoon, but no more after that. He has had very loose BM's since then, once or twice a day. He doesn't particularly act sick, unless his tummy is "rumbly" but then again, he's not quite as wild as usual some of the time. I talked to our cardiologist to make sure it's not from one of his meds and he said just to make sure he is not getting dehydrated. We have tried to stick to the diet that they recommend - BRAT = bananas, rice, applesauce, and toast - but he doesn't like half of those things. He keeps asking for Chick Fil a and chocolate Teddy Grahams. Not so good for a sick belly. I do not want to take him to the doctor's office for fear of picking up a bug there. We are almost 2 weeks away from our surgery date, so I am getting VERY antsy. Any ideas of what to do for him?

In preparation for surgery, have your doctors recommended quarantine? We are really wanting to take Zach to see Toy Story 3 but that makes me nervous to think about taking him out around a lot of other children.

I am feeling a lot of anxiety about keeping him healthy and about surgery in general. Each day more and more, I feel the anxiety "boiling up" and the feeling of panic about overwhelms me. I keep reminding myself that God is in control. I have to depend on Him and allow this experience to strength my faith. So hard...

Thanks for checking in on us. We covet your prayers as we head down the home stretch toward July 7!

Big announcement and Family Beach Trip 2010

2010-06-09T16:05:00.002-04:00

Things have been so crazy these past few weeks! I noticed that I have not posted in over 2 weeks! I have so much to update here... where to begin???

Well, first of all, I won't keep you guessing about my big announcement (lest some of you jump to drastic conclusions like "Pam must be expecting!" Let me assure you that 40-year-old Pam is NOT EXPECTING!) But there are going to be some big changes for our family!

I am the new School Library Media Specialist at a local Junior High School!

I completed my degree last December. We were originally planning to wait for me to find a job until Zach was ready for full-day 5K, but God provided this opportunity now. I don't know what the economy is like in terms of education where you live, but around here, things are tough. Word is, it will be worse for the 2011-2012 school year (when I was planning to hunt for a job). So, I am taking this job.

We have found a great preschool for Zach that is only about 1 mile from my school. It will be nice to have him close by in case he should get sick or something. He will be delayed in starting school because of his surgery --- his cardiologist said we could expect about 6-8 weeks, so that puts us at the end of August. We have a lead on a young lady from our church to stay with him some when Bill needs to work away from home.

Some days, I think I am crazy for attempting this right now, with all that we have ahead of us for the month of July. Please pray extra hard:

for Zach to be healthy prior to surgery so it won't be postponed
for surgery not to be postponed by us getting bumped
for Zach's recovery to be complication-free so we can get home and do some real recouperating.

Thank you so much for your faithful prayers!

Beach Trip 2010

We went last week to our annual beach trip with my family. For the past 10 years, my folks have rented a huge house for the whole family and extended family to gather at. It is always so much fun but so crazy with 20-25 people there! This year, Zach had an awful reaction to the sunscreen on the first day there. The crazy thing is, I know we used that same type of sunscreen last summer with no problems. I went and bought some milder stuff to no avail. He was pretty miserable and it affected his behavior as well. I ended up getting some Benedryl, which helped with the itching and made him sleepy rather than hyping him up. (One time, I gave Rebecca some Benedryl and her eyes stayed dilated for several hours! She was a wild child on that stuff! So, needless to say, I was a bit concerned about giving Zach the stuff, being that he is already a wild child!!!) He is no longer itching but still has the rash on his back, chest, and belly. The doctor said to let it clear up and then try a small patch with a basic cream sunscreen for babies. He said to avoid the spray-on stuff.

We have been really slack about having professional pictures made. Here's some pictures that my sister-in-law took of us on the beach. Zach cooperated for just a few pictures, but I was really pleased! I think they look quite professional!

I included the one of Zach on the steps going back up to the beach house. He had decided that the photo session was over!

We had a ping pong table, pool table, and foosball table in the media room. Needless to say, that is where the kids spent most of their time. This is Rebecca and my sister's two children.

Zach in his favorite hiding spot --- under the pool table!

As you can see, I have a big family. There's my mom, my 4 siblings and their spouses and kids, and some of my aunts and uncles from my mom and my dad's side. Lots of love to go around!

We also had a pool --- it was well used despite the water being quite cold.

We set up tents on the beach and Bill and Zach put them to good use for an afternoon nap.

In the afternoons, there was a huge tidepool for the kids to play in.

Low tide provided lots of room for a game of chase!

Our little heart warrior was just happy to splash in the waves! Don't you love the reflection in the sand?

Hope you are enjoying your summer, too!

2010-06-07T13:45:00.002-04:00

Testing... testing... im setting up mobile blogging in case we don't have access to internet at the hospital
**Pam**

God doesn't make mistakes...

2010-05-19T16:53:00.001-04:00

I actually started writing this post a long time ago. It has been sorta "marinating" in my mind.

After Zach was diagnosed with CHD, I struggled with many questions. The one that plagued me the most was,

If God doesn't make mistakes, then how do you explain heart defects (or any other birth defects, for that matter)?

First, let me set the record straight. As any parent of a child with special needs will tell you, there is a whole continuum of emotions that you go through, particularly in the beginning. You experience everything from anger with God to denial to fear to complete trust in The Creator. Since God created me and my emotions, I don't think any of those feelings are wrong unless I allow them to turn me away from God indefinitely. God will use even negative emotions to draw me to Him, BUT I have to make the choice to move toward Him and not away from Him.

So, as Bill and I sat in the waiting room during Zach's first surgery, the BT Shunt, I opened my Bible and began reading. I was crying out to God to please save the life of our baby through the skilled hands of the surgeon, anesthesiologis, and nurses. I was questioning why God allowed this to happen to our little boy. I was needing confirmation of what I knew in my head to be true --- God does not make mistakes.

At the time, my mind just couldn't produce any addresses to scriptures that would settle my head and heart on this matter. Now, as I sit at my computer, I can use Bible Gateway to do a keyword search to find any number of verses about God's perfection, such as:

Deuteronomy 32:4

The Rock—His work is perfect;

all His ways are entirely just.

A faithful God, without prejudice,

He is righteous and true."

Psalm 18:30
As for God, his way is perfect;
the word of the LORD is flawless.
He is a shield for all who take refuge in him.

Matthew 5:48
Be perfect, therefore, as your heavenly Father is perfect.

Romans 12:2
Do not conform any longer to the pattern of this world, but be transformed by the renewing of your mind. Then you will be able to test and approve what God's will is—his good, pleasing and perfect will.

God is perfect. His will is perfect. His creation is perfect.

Despite turning to these truths, even now I still struggle with my son's diagnosis - Congenital Heart DEFECT.
A defect is a mishap, a flaw, a mistake. Not perfect.

In the midst of all the turmoil going on in my grieving heart as I sat in that waiting room, as helpless as my baby laying on that cold operating table, God gave me this scripture:

1 Corinthians 12: 14-20

Now the body is not made up of one part but of many. If the foot should say, "Because I am not a hand, I do not belong to the body," it would not for that reason cease to be part of the body. And if the ear should say, "Because I am not an eye, I do not belong to the body," it would not for that reason cease to be part of the body. If the whole body were an eye, where would the sense of hearing be? If the whole body were an ear, where would the sense of smell be? But in fact God has arranged the parts in the body, every one of them, just as he wanted them to be. If they were all one part, where would the body be? As it is, there are many parts, but one body.

Now, I know that Paul is talking about spiritual gifts here and how everyone has an important role, no matter what they were gifted to do. Maybe I am interpreting this scripture out of context, which can be a dangerous thing to do. Nonetheless, I know beyond a shadow of a doubt that 1 Corinthians 12: 14-20 gave me a measure of peace that morning so long ago. God didn't make a mistake. God created Zach and his special heart just as He wanted them to be. Perfect.

Scripture in action...

2010-05-16T22:43:00.006-04:00

As I was looking at some pictures from the past week, I noticed that God has a way of showing us His word in everyday life, if we are just willing to look for it. For instance...

Zach with his Daddy...

"Come, follow me," Jesus said, "and I will make you fishers of men." Matthew 4:19

Zach and Rebecca's cousin, Eli...

For everyone who asks receives; he who seeks finds; and to him who knocks, the door will be opened. Matthew 7:8

Eli again...

I will praise you as long as I live, and in your name I will lift up my hands. Psalm 63:4

Zach on a "mountain" of mulch...

"I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you." Matthew 17:20

Zach + WASHABLE paints...
Light is shed upon the righteous and joy on the upright in heart. Psalm 97:11

Zach with Nana...

I have been reminded of your sincere faith, which first lived in your grandmother Lois and in your mother Eunice and, I am persuaded, now lives in you also. 2 Timothy 1:5

Zach with his "Sissy"...

"A new command I give you: Love one another. As I have loved you, so you must love one another. John 13:34

What a challenge to each of us... to truly "love one another." I can testify that life with our Heart Warrior helps us to remember to do just that!

Birthday celebration! Updated...

2010-05-03T14:22:00.003-04:00

On his birthday, Zach proudly proclaimed "I'm getting big!"

I said that yes, he was getting big.

I told him that when he was born, he was so little that I could hold him in one arm, like a football.

He said "Did you throw me?"

That boy is a hoot!!

We celebrated Zach's birthday at Mr. Gatti's, which is one of those places that makes a heart mom shudder and bathe their little heart hero in Germ-X. Anyway, it is a lot of fun. We played games, ate pizza and salad, Zach opened presents and we all ate cake (Bill and I cheated on our diet and it was soooo good!), and then we played some more games. Zach and Rebecca got free tokens for the bumper cars and loved it despite Mommy's hesitance to let Zach ride. Here are a few pictures from the day...

Look at that smile! How could Mommy say "No"?

The Batman version of Whack a Mole --- see the huge Batman glove Zach has on?

My two strong men!

Zach's latest favorite movie... Up!

Our own personal cake maker: Nana! She made our wedding cake and just about every birthday cake for the kids! She is very talented!

Buzz, Woody, Jessie, and Bullseye!

Ready to blow!

It's the Red Baron flying high!

We all had a blast!

Nana and Papa came up on Saturday to celebrate some more. You just can't have too many birthday celebrations! They brought him a super cool gift...

Guess what he would rather play with?

He also got a couple of cards with money in them from family members. He says that he is saving his money so he can go buy some new underwear. Go figure...

Happy Birthday to Zach!

2010-04-28T23:02:00.005-04:00

Zach, you amazing little man! You are 4 years old today!

There's no way to express our thankfulness to God for what we have seen Him do in and through your life.

The warmth of your smile, your bubbly personality, and your full-throttle way of living life has touched the lives of many, especially your family.

Many special people have been a part of helping you on your journey to becoming the man that God created you to be: doctors, nurses, therapists, Sunday School teachers, AWANA teachers, and extended family.

You have been a constant reminder to everyone to enjoy each day that God gives us.

We celebrate with you today!
Happy Birthday! We love you!

Love and Marriage...

2010-04-21T14:23:00.000-04:00

Zach is always very observant and curious. I had a cute conversation with him in the car the other morning.

I had just dropped a card in the mail to a couple that we know that got married about 3 months ago and I was just getting around to sending them a wedding gift. Slack, I know... Anyway, here's how the conversation went...

Zach: Why they get married?
Me: Because they fell in love.
Zach: I know you and Daddy got married.
Me: Yes, we did. We met and went out on a date and went out on some more dates and fell in love.
Zach: But where was Bec-Bec? (big sister)
Me: She wasn't born yet. She was just a sparkle in Mommy and Daddy's eyes. You weren't born yet, either. You were a sparkle in Mommy and Daddy's eyes, too.
Zach: Yeah, and I said to Bec-Bec, 'When we get born, we gonna be sparkly!'

They kinda make me feel all "sparkly"!

The Call

2010-04-16T09:39:00.001-04:00

As I was reading a tear-jerker of a devotion this morning, the phone rang. I looked at the caller ID and recognized the area code. It was MUSC calling. I knew this call would be coming this week or next. I was expecting it. Maybe it was my already-raw-emotions, but I teared up even before I answered the call. I managed to hold it together through the conversation. Then I called Bill with the news...

We decided to take the first date they offered so hopefully he will be ready to start 4K in the fall.

The surgery will be July 7.

We go for pre-op the morning of the 6th, so that means travel on the 5th. Dr. B. that did his heart cath said to clear our calendars for a month, since everything depends on how his chest tubes drain (he will have 3!). After the Glenn, he developed chylous drainage, due to the thoracic duct being damaged, so he will likely have that again. She said we could expect anywhere from 2 - 4 weeks in the hospital. Can't seem to wrap my brain around a month right now, so we'll be optomistic and think 2 weeks...

Please be praying for all of us as we head down this road...

Heart hugs!
Pam

Update on Zach's recovery

2010-04-10T21:55:00.001-04:00

Finally Zach is feeling more like himself after his heart cath. Today, he had a ball playing outside. It's really the first day that he's felt like being up and around (and I was so worried about how to keep him from running and jumping!). He has run low-grade fevers on and off for several days and still had one on Friday night. We were concerned because his fever went up to 101.4 on Wednesday night and Thursday morning. I talked to the MUSC Ped. Cardiology Fellow twice and if it had continued, we would have carted him off to the doctor for some blood work to make sure there was no infection. Praise God, it never went that high again. The doctor said the dye they used during the cath can cause fever and the coils they placed also cause an auto-immune response. Hopefully we are past all that now. God answers prayer!

There's no place like home! There's no place like home!

2010-04-07T17:05:00.001-04:00

Finally! We are home from MUSC. Praise God, Zach's cath went well. The doctor said he is ready for the Fontan sometime in the next few months, whenever we want to schedule it. She is putting in the request and we will be getting a call to set everything up. We have to look at our schedules and check with our friends who graciously loan us the use of their condo, which is about 10 minutes away from the hospital.

The cath took at little longer than expected because they had to take care of a long corollary artery. It stretches from his shoulder to the bottom of his lung and was preventing the upper area around his Glenn from adequately profusing. I really didn't understand until after the fact how this works. They had to put in 28 coils! I thought they would put in one coil and it would block off the artery. Apparently, they put the coils end to end until they fill up the artery. Amazing!

We had to be at the hospital at 6:15am to register and then were upstairs at 6:30 for prep. Let me say that the team that took care of us was wonderful! Nonetheless, by about 7:15, Zach was starting to ask for a "nack" (snack). He was hollering across the room to the nurses, "Heeeeeyyyy! I wanna 'nack!" When they didn't respond, he said "Mommy, she can't hear me. What 'da matter?" He would ask every new nurse or doctor or anethesiologist that came by to talk to us for a 'nack. This one nurse, Jerrard, was so good with Zach and brought him a bunch of those fake tattoos and let Zach pick out 3 or 4 of them. I thought they were for him to take home, but turns out, they put them on Zach while he was asleep for the cath, so Zach would be surprised to find them on his arms, tops of his feet, and one right over his heart zipper! I'll try to get a picture of this one later.

Finally, just before Zach flaked out from hunger, our nurse brought him a syringe of Versed. He sucked it down like it was good. A few minutes later, as he sat watching TV, I had my arm around him and all of a sudden he sort of laid back on my arm like a ragdoll. He had this goofy grin on his face, and his eyes were about half closed. He giggled a little bit and tried to talk, but couldn't seem to make a word. He was a happy drunk!

After the cath, with Buzz and Woody by his side, he's still very groggy and ready to "Goooo home!!!"

On the way to x-ray to make sure all those coils are still in place.

So, now we have to keep him still until Friday. Ought to be interesting! This boy NEVER sits still! Please give me some ideas of quiet activites that have worked for you.

Spring Break and Prayer Request

2010-04-02T09:30:00.006-04:00

We are on Spring Break this week. So far, we have been to the beach and now we are at my Mom's. We went to the zoo yesterday with some family and had a great time even though most of the animals were asleep and it was pretty hot.

Zach loved running from the waves at the beach!

Zach with his cousins at the zoo

Dad and Rebecca visiting the zebra

Zach and Daddy on a safari

Look at this heart-shaped knot-hole I spotted. How cool!

I wanted to ask our heart buddies to pray for Zach for two reasons.

First, Zach is scheduled for his cath for next Tuesday, April 6 at MUSC. We will travel down Monday night.
Second, Zach has had some tummy issues the past couple of days. We hope it is just from not eating and drinking his normal stuff. He hasn't been running a fever or anything and feels good. He has just had a few loose BM's. Anyway, please pray that this would resolve itself before Monday and that Mom, Dad, and sister would be healthy, too.

Thank you for your faithful prayers!

Eating right...

2010-03-24T14:51:00.001-04:00

A while back, I checked out a book, one of a series, from our library called Eat This, Not That. Have you seen these books?

Eat This, Not That!

There is a ton of info in these books! Go to Amazon and check them out. They sell them at Walmart, too. I try to be careful about what we eat, but I was blown away as I read some of the nutritional info of the foods that I am buying for my family. Yikes! The fat... the sugar... the sodium! I have never really worried about sodium all that much, but I have been thinking about it more lately, especially for Zach. He's currently on Lasix for some pulmonary vascular congestion, so maybe I need to pay a little more attention...

The Funky Heart got my attention today with a post about "Low sodium" salt and that got me thinking... how much salt should Zach be getting? I haven't taken the time to Google it and I can't seem to remember to ask our cardiologist about it (my brain usually turns to mush during appointments and I can't remember a thing --- need desperately to make a list). Maybe I'm worrying about something that is not really a problem, since our doctor hasn't given us any diet restrictions. In any case, does anyone have any guidelines that they use? Any good recipes? Other tips of what to get a picky preschooler to eat?

How to prepare...

2010-03-22T14:16:00.004-04:00

Today Zach overheard me telling my mom on the phone that we had to go to the hospital on April 6th. His little brow wrinkled up with worry and he said, "We goin' to da hopital? Who gonna lay down?" (I think he was asking who was going to get poked and prodded?) He was obviously starting to get anxious about it and he put both his hands over his eyes. I reassured him that Mommy and Daddy were going to be right there with him and that it would be a lot like when he goes to see Dr. Raunikar (our cardiologist). I told him that they would check his oxygen and blood pressure and weight and listen to his heart. I promised that we would get to see some old friends --- Dr. Bradley (maybe) and Dr. Bandisode. I told him that we would meet some new friends, as well. I told him that maybe we would get to meet the same people that had taken care of Derrick and Zeb and Anna Grace, our local heart zipper friends.

My heart breaks to think about what he will have to go through in just a couple of weeks. I get nervous as I think about talking about the procedure more with him as the time draws nearer. At the Palmetto Hearts conference that we attended in February (which was wonderful!), the Child Life specialist from MUSC spoke about this very topic. I was surprised to learn that it is best to begin preparing your preschool child only about 2-3 days prior to the procedure/surgery. Because preschoolers have no concept of time --- Zach's famous for asking, "Am I gonna take a nap tomorrow or later?" --- talking about surgery that is weeks away will only cause them anxiety. Makes sense. On the other hand, she told us that it is not a good idea to spring it on them, either. She knew of one family that told their child that they were going to McD's but took him to the hospital instead. Not a good idea.

I did show Zach this picture from after his Glenn at MUSC.

Of course I have other pictures that I wouldn't dare show him for fear of scaring him.

For those of you with older children, how have you prepared them for procedures/surgery? What worked and what didn't with your child? I love that we can learn from one another!

Heart friends are the best!

2010-03-15T10:50:00.000-04:00

My blog buddy, Shannon, is doing a fabulous giveaway on her blog --- click HERE to see the adorable picture frames that you can win and what you need to do to win them. While you are at it, you can check up on Shannon's adorable son, Derrick. What a cutie!

Cardiology checkup

2010-03-12T13:17:00.001-05:00

Zach had a checkup with the cardiologist this morning. Dr. R is following him closely in preparation of his upcoming heart cath on April 6 at MUSC. He did another heart cath and said that everything looks as good as it can get. His leaks are the same (not worse - PTL!), murmur sounds the same, systolic function (whatever that means) is as good as a healthy heart.

I asked about Zach's weight (he was 30.3 lbs) and if we should try giving him something to supplement his diet. He is a typical preschooler in that he eats mostly chicken nuggets and mac and cheese. He likes baby carrots w/ ranch and will eat green beans with a lot of encouragement. He loves fruit. The problem is, he doesn't drink much milk and lately doesn't eat cheese except on pizza. He does like yogurt and eats 1-2 tubes of Go-Gurt a day. He said it would be ok to try some Pediasure. He just doesn't want to overdo it because he is pleased with Zach's growth thus far and proportionally, his weight measures up to his height (no pun intended). He doesn't want him to get chunky.

One thing that he said bothered me a bit --- no, a lot. He said the heart cath would help them assess whether Zach was a good candidate for the Fontan. Not sure if he meant "right now" or "ever" and I didn't think to ask at the time. So, not having the Fontan means... what? Anyone with any insight on this, please chime in and calm this mama's nerves.

The biggest blessing of our visit with Dr. R is that he prayed with us! We circled up and held hands, Zach included, and had prayer for Zach's cath, for safe travel to MUSC next month, and for wisdom for us as Zach's parents. How precious! We are so blessed to have a wonderful, Christian doctor!

Talking about adoption

2010-03-09T14:40:00.005-05:00

We have always wanted to be open with Zach about his adoption. There's really no point in hiding it from him... I think he'd figure it out eventually. What do you think?

We weren't hiding anything --- I often had conversations with adults about his adoption within earshot of Zach, but we really hadn't talked with Zach about adoption because 1) we didn't feel that he was at a point where he could understand and 2) we didn't feel that he could sit still long enough to try to understand.

I felt the Lord leading me to address the issue recently. So, I went a-Googling "talking to preschoolers about adoption" and wound up at Focus on the Family's site and printed out a couple of articles. This was our dinner conversation that night:

Me to Bill: I printed out these articles on talking about adoption.

Zach to Mommy: (who, by the way, is usually pretty oblivious to the conversations around him) What's adoption?

Me to Zach: Uhhh... ahhh... uhhh... Well, you are! (adopted)

You see, I wasn't quite prepared for his question at that particular moment. Bill and I continued to talk about other stuff when Zach interrupted...

Zach to Mommy: What's adoption?

Mommy to Zach: (trying to remember everything she had read in the articles) Well, adoption is when a birth mommy loves her baby enough to let someone else take care of him.

Zach thought for a moment and his eyes lit up and he said,

Zach to Mommy: So we can go to Toys R Us?

Mommy to Zach: You got it, buddy!

Preschoolers are waaaayyy more perceptive than we give them credit for, aren't they? So, adoption is now a part of our everyday vocabulary. Of course, we get a lot of looks when we are out and about and you can just see people trying to figure it out. Some people are not shy about asking if he's adopted or where he is from and I'm always excited to share about our adoption experience.

One day Zach and I stopped at a fast food restaurant for lunch. The young man behind the counter looked at Zach and said, "He mixed?" to which I said, "Excuse me?" for I hadn't understood what he was asking. When I finally realized that he was asking if Zach was biracial, I explained that no, he is adopted. Zach then piped up and said, "I not adopted!" Typical silly boy!

The young man then asked, "So is it fun to adopt?" I smiled and said, "Yes it is. It is very special."

The day of Zach's birth, 2006

We love AWANA!

2010-03-03T17:02:00.003-05:00

Zach started going to AWANA this year, which, in case you are not familiar, is a weekly activity where kids recite Bible verses they memorize at home, do crafts, and play games. He is a Cubbie. He absolutely loves going each Wednesday night to spend some time with Mr. Chuck, one of the workers in his class.

Zach in his Cubbie vest with Mr. Chuck

Don't you love it when you are trying to explain the wonders of God's Word to your child and it just goes right over his head? This afternoon, we were practicing Zach's AWANA verse for tonight, which comes from Matt. 28:20.

"I am with you always."

I commented on what a great promise that is from the Bible and explained to Zach that even when he lays in his bed at night (which he refuses to do by himself --- errrgh!), Jesus is there with him. He responded, "Yeah, Buzz and Woody are there, too!" OK, so I guess he's technically correct on that one...