In the Midst of Craziness

The last year has been filled with craziness: Colby's diagnosis during my 20th week of pregnancy, Colby's birth, the 11 day NICU stay, the surgery and resulting hospital stay, our "house arrest," constant doctor's appointments, and just the daily stress of Colby's eating/weight gain (or lack there of). With so much going on, Jason and I have not really had much time or energy on our hands. Since hearing Colby's next surgery will not be until late summer, though, we have actually been able to sit back and breathe again. Don't get me wrong, we are by no means relaxed, but we are at least a little less crazy around here, which has been so nice!

With our new found "free time," Jason and I have been reflecting on how big our little baby Brody has gotten. It is amazing to us how much he has "grown up" since Colby was born. For starters, he gave up his pacifiers back in March without a fight. The "Paci Fairy" came during nap one day and took all of his pacis away but two. Don't worry, she of course brought a big treat to replace the pacis!! He only used those two pacis during nap and night time for a couple of weeks, and then we asked him if he wanted to put those two pacis in the drawer of his bunk bed and not use them anymore. To our surprise, he agreed with no problems! Occasionally he wants to look at the pacis and tell them night night, but other than that, he hasn't even asked about them. Pretty impressive!


Brody has also impressed us recently with his potty training. I have to admit that Jason and I have put this process off, and would have continued to put it off for as long as possible, if Brody hadn't initiated it. One night when Jason was putting him to bed, he said, "I want to go potty in big potty...like daddy." He went that night, and he hasn't looked back since. I think he has only had one wet pull-up (other than sleeping times) in over two weeks. I don't know many kids that potty train themselves, but luckily for us, ours did! Now if we could just get the "shoo wee" (as Brody calls it) in the potty instead of his diaper! One step at a time I guess.

In addition to no pacis and using the big potty, Brody's vocabulary has grown so much! He talks non-stop! I'm sure that this isn't surprising to anyone that knows Jason, though. Every day, he throws a new word or phrase out there that we have no idea how he learned. It is so funny to hear him tell a story, which he does quite often. I think his favorite time of the day is when Jason gets home from work, because he will go through our entire day to tell Jason all that we have done. I do have to translate some of the words, but he seems to speak more clearly with each day. He has also started using his hands when he talks, which cracks me up. I love watching him, because he is so animated and gets so excited. Again, no surprise to anyone who knows Jason!

Brody is very big into doing things "just like daddy" or "just like mommy" right now. It is hilarious and also a little scary to see him mimic us. I have found myself more than once thinking, "do I really do that?" My favorite is watching him mow the grass "just like daddy." He loves using his bubble mower to follow behind Jason as he uses the "big mower." One Saturday, Brody mowed the entire yard with Jason, and then, he got his play chainsaw and pretended to cut the bushes. To finish off the day of yard work, he got the hose and watered the grass. He absolutely loves to spray the water!! Unfortunately, he likes to spray people as well as the grass. He has sprayed our neighbor, Woody, more than once. I'm just glad Woody thinks he is so cute!!

Since Jason and I have been reflecting on how big Brody has gotten, I wanted to post this along with some pictures to brag on him a little bit. He is such a good boy, and he always makes us smile! I don't know how I would have gotten through the stress of the last year without him. It's funny to think that a two year old is what helped me hold it together. God works in mysterious ways, and he always provides us with just what we need when we need it the most! We love you Brody!! Thank you for being such a good boy and a great big brother to Colby!!

Mystery Solved

Well, we now know that Colby did not have a stomach bug the other day. Apparently, he just cannot tolerate the formula concentrate. We hesitantly tried it again this morning as directed by our cardiologist's office, and once again, the poor baby threw up several times just a couple of hours after drinking his first bottle. It is very strange, but I guess he is just not going to be able to have any formula in his bottles. We have now tried several times with several different types of formulas (different brands, types, powder, liquid concentrate), and none of them have worked. We are officially done with adding formula!! We do not want to see Colby sad from throwing up any more! He was pitiful this morning with his big crocodile tears.

I'm not sure what we are going to do to increase his calories now. I will have to speak with the nutritionist again on Monday and tell her that the formula is definitely out. Hopefully she will have some other suggestions. The good news is that he is wanting to feed himself finger foods now. The other morning he ate almost 1/4 of a banana. Maybe we can just keep adding more finger foods to his diet and see if that will help. Of course, that will only work if he continues to want to eat finger foods. We will just have to take it one day at a time!

Spring Fling is Almost Here!!

I wanted to remind everyone about Primrose School of Hendersonville's Spring Fling / Family Health Day. It is coming up on Saturday, May 2nd from 10 - 2pm. Please make plans to attend!! There will be so many fun things for the kids to do, and you can show your support for Colby and other babies with CHDs. The proceeds from the day will be donated to the Vanderbilt PCICU in Colby's name. What could be more fun on a Saturday than a Family Carnival? Hope to see everyone there!

For more information, please visit Primrose School of Hendersonville's website.
http://www.primroseschools.com/schools/EventsCalendar/EventDetail.aspx?id=48117&schoolID=131

Bath Time

The other day, we let Brody and Colby take their first bath together. They had so much fun! Brody loved showing Colby all of the bath toys and pouring water on him. He kept saying, "I get Colby all clean!" This was Colby's first bath with bubbles, and he seemed to really like them. I just haven't figured out how to keep him from eating them!

Back to Normal

We are happy to report that Colby has been doing great since late yesterday afternoon. It is very strange. This was either the shortest case of a stomach bug ever (lasting only a few hours)or it was just a very bad reaction to the formula we put in his bottle. Jason and I are really thinking it may be the formula. It just seems strange that he was back to normal as soon as he had thrown up all of the formula he had consumed. Either way, we are just glad that he is better!

To be on the safe side, I plan to call our cardiologist's office tomorrow to see what their thoughts are. If there is any chance that the formula concentrate is what made him sick, we definitely don't want to try that again!

Colby's First Stomach Bug

Colby has managed to avoid the nasty stomach bugs that have gone around for almost 9 months now, but today, he wasn't so lucky. When I went in to get him up this morning, the poor little guy had just thrown up. My first thought was that he was reacting badly to the formula concentrate that we just started. He had his first bottle with it in there two hours before this. When he continued to throw up several more times, though, I decided to take him in to see our pediatrician.

Dr. Hudson seems to think that it is just a stomach bug. Fortunately, he has not had a fever and he is currently still hydrated, but there is always the fear that he will become dehydrated. With his shunt, we cannot let that happen!! Colby is not a great eater any ways, as you all know, so I am very worried about how much we are going to get him to eat while he has this bug. We of course will stop adding the formula for now until we can get him better. We will also try giving him some Pedialyte. I have a feeling that I will have to resort back to feeding him with a syringe before this night is over! He has currently only taken in about 6 ounces since midnight. Yikes!!!

Please keep Colby in your prayers. Please pray that he can recover quickly from this bug! This morning he had already lost 4 ounces since last week, and that was just after throwing up for one morning. Our poor little monkey can't afford to lose any more weight!!

I was going to include a picture of Colby not feeling well, but he is still all smiles!!! I would have never known he was sick if he hadn't been throwing up. I'm telling you, he is such a trooper...a happy trooper at that! We are blessed for sure!

Cardiologist Visit

Yesterday, Colby went to Dr. Liske's office for his one month follow-up visit. I am happy to report that there has been no change over the last month. Dr. Liske seems to think he is still looking good, which we always love to hear! He hasn't gained much weight, but he is at least still following his growth curve. Dr. Liske assured us that although his weight gain is slow, it is still acceptable. In an attempt to help him gain weight a little more quickly, we are going to once again try to increase his caloric intake by adding formula concentrate to his bottles. We haven't had much success with this in the past, but I am keeping a positive attitude and am hopeful that he will be able to tolerate it better now that he is a little older. We will just have to wait and see. Our goal is to get him up to 27 cal/oz. He is currently only taking in 24 cal/oz.

Since Colby's exam went well and his sats looked good, Dr. Liske is going to tentatively plan on his cath procedure for mid-July. The cath has to be done prior to his next surgery...it is just a diagnostic cath to take measurements, get a more accurate oxygen saturation, etc. The only reason we would have to move this up is if his sats drop in the next few weeks. Once the cath is done, we will be able to schedule an exact date for his Glenn Operation. All we know right now is that Dr. Liske wants it to take place between late summer and early fall. The more time we have for him to gain weight, the better!

Jason and I are both very happy with how the appointment went. We will follow up with Dr. Liske in one month. Hopefully there will be no change again, and we can continue to put off the cath procedure and surgery as planned! We will keep you posted as always!

Easter Fun

This Easter, we had so much to celebrate! We were able to spend the entire day together as a family, without worries of surgeries, hospitals, or doctor's appointments. It was wonderful!

We started our day at church. Brody was really excited to hear that Colby would be going to church. He kept saying, "we all go church...mommy and daddy and 'Broda' and Colby." It was fun to get both the boys dressed in their Easter clothes. I always love an opportunity to take more pictures! The sermon at church could not have been more perfect. It was based on the song, "Because He Lives." This is a song that I have sung so many times before, but it now has a whole new significance for our family, especially the following verse and chorus:

How sweet to hold a newborn baby,
and feel the pride and joy he gives;
But greater still the calm assurance:
This child can face uncertain days because He lives!

Because He lives, I can face tomorrow,

Because He lives, all fear is gone;
Because I know He holds the future,
And life is worth the living,
Just because He lives!

I found myself just staring at Colby as I listened and as we sang, and I was filled with so much happiness! No matter how stressed, worried, or sad I get when I think about Colby's future, I know in my heart that he will be okay. He will continue to face uncertainty and difficulties (more than any baby should have to), but God will be with him, and us, every step of the way. Being reminded of this was such a wonderful way to start our Easter!

We didn't have time to look at the goodies the Easter bunny brought before church, so afterwards we went home for Brody and Colby to check it out. Fortunately, the bunny hid the goodies in the laundry room (so we could get out the door for church with no melt downs), but unfortunately, I didn't get a chance to take everything out of the laundry room before Brody was ready for them. So, we let Brody go on a hunt for his Easter goodies. It was kind of fun to see him look in all the rooms and then get so excited when he finally found his presents in the laundry room. Now, every time we mention Easter and the Easter bunny, though, Brody talks about how his goodies were in the laundry room. We may have unintentionally started a really strange tradition...not many kids find their Easter baskets in the laundry room!

Brody and Colby loved everything the bunny brought. Brody's favorite is the bubble blower lawn mower, and a close second is his new Spiderman place mat. Colby really likes his tool bench, but I think he has the most fun chewing on his new little books. The poor little guy is still trying to get those first teeth in, so he loves anything he can get into his mouth right now.

After spending a few minutes at home, we packed up and headed over to my grandmother's house for Easter lunch. Granny Shug always prepares a huge and delicious feast for everyone. It was great to spend time with my parents, sister, aunts, uncles, and cousins. After lunch, there was a big Easter Egg hunt for all of the kids. Last year, Brody wasn't too sure what he was supposed to do, but this year, he did great! Of course, he was much slower than everyone else. He had to stop after picking up the eggs to examine them carefully and show Colby what he had found, which was really cute. Brody even found a prize egg that Granny Shug had hidden. It was a Spiderman egg with 50 cents inside. He was so excited to find "mooney" in his egg!

Granny Shug holding Colby for the first time.
Colby loved Granny's dog Angel.

Gacky and Colby

Daddy and Colby relaxing after lunch

Brody showing Colby his eggs

Gacky and Brody still looking for eggs

Brody's Prize Egg

The boys were exhausted after all of this fun, so we went home for an afternoon nap...a much needed afternoon nap! Then, to end our day, Jason's mom (Nana) came over to visit. She of course brought more Easter treats for the boys. So, we had some dinner and watched Brody and Colby play with all of their new toys that they got from the bunny, Nana, Gacky and Granna, and Nenny and Pa. Our house looked like we had just opened Christmas presents! We are truly blessed, and we are very thankful to God for all that we have!!

I am so glad that Colby's first Easter was a great one! The only thing that would have made it better is if we had seen Poppy, Nenny, Pa, Jeremy, Tammy, Emilee, and Kylee, but unfortunately, we just didn't get an opportunity to do that this year. Hopefully next year, we can figure out a way to spend time with all of them as well!

Getting Ready for Easter

To start our Easter weekend off right, we went over to the Rowell's house to color some Easter eggs with Mary Grace, Carolyne, Tucker, and Carleigh. I cannot believe how much fun Brody had with this! I kind of expected him to do one and be bored with it, but instead, he insisted on doing several eggs. He had to have one in each color.

Colby liked watching everyone work. He was smiley as usual. It will be fun to see him doing his own eggs next year. I'm sure that Brody, Tucker, and the girls will be glad to show him how it's done!

Mary Grace and Carleigh were pros at this. They both created some really pretty eggs. Tucker worked hard on his eggs, too. Before he was done, both of his hands and arms were as colorful as his eggs...too much fun!

A Busy Spring Day

Last Thursday, the weather was absolutely gorgeous. I knew that I had to take advantage of it and get these boys out of the house for some fun! We started our day by going to buy some spring flowers to put in the planters on our front porch. I was surprised by how much fun this was for Brody. He loved it, and he is so proud of the flowers that he picked out.

Our next stop was the park to feed the ducks, which Brody and I did all of the time last year. This was Colby's first time, though, and Brody was so excited to show him the ducks. He kept saying, "see the ducks Colby? Quack, Quack." He even let Colby get in on the action by having him hold the bread until he was ready for it. We had such a good time! It was great to be out of the house and enjoying some fresh air and beautiful scenery. We will definitely go feed the ducks as much as possible this spring and summer.

The last stop of the day was to get Brody's hair cut...finally! His hair grows so fast, and it had just gotten out of control. I think I am going to have to schedule these haircuts more regularly. He was so funny that afternoon. He looked at me and said, "mommy, I can see now." That is really bad!

Mark Your Calendars

On May 2nd, Primrose School of Hendersonville will be holding their annual Spring Fling/Family Health Day. Before having Brody, I worked at the school as a teacher, assistant director, and then as the director. I absolutely love Primrose, and I especially love the owners, Jason and Deanna McGee. They were not only my employers, but they were, and still are, my friends. I couldn't have asked for a better place to work or for better bosses!

This year, Jason, Deanna, Lynn (the director), and Ashley (the assistant director), have decided to do the Spring Fling in honor of Colby and Congenital Heart Defects. This is such an honor! I think it is so great of them to think of Colby and what he is going through. Hopefully, we will be able to use this huge event to spread some much needed CHD awareness. Also, a portion of the money raised will be donated to the Vanderbilt Pediatric Cardiac Intensive Care Unit (PCICU) in Colby's name. This is the unit at Vanderbilt that takes care of Colby and all of the other heart babies and children that have heart surgeries at Vanderbilt. It is an amazing unit with absolutely wonderful nurses, doctors, and staff.

I hope that everyone is able to come out for this big event. In the past, they have had bouncies, pony rides, train ride, games/activities, dunk tank, food, bake sale, and lots of fun!!! Please mark your calendars for May 2, 2009 10am-2 pm. You and your kids can have a blast while helping spread CHD awareness and raise money for a unit that is doing incredible things for heart babies all over the region.

Click on the link below for more information about Spring Fling. Let me know if you have any questions. Hope to see everyone there!!!
http://www.primroseschools.com/schools/EventsCalendar/EventDetail.aspx?id=48117&schoolID=131

Our Friend Cain

Colby's little heart buddy, Cain, needs your prayers right now!! For those of you that don't remember, Cain was born 2 months ago. He has the same defects as Colby plus an additional defect called Transposition of the Great Arteries. Cain underwent his first surgery, the BT Shunt, at only a week old. This is the same surgery that Colby had back in October. Over the last several days, Cain's parents noticed his sats trending downwards, so they took him in to see our cardiologist. After an echo, chest x-ray, and EKG, Dr. Liske determined that they might want to go ahead and do his Pre-Glenn catheterization. This is the first step to having the Glenn Surgery performed.

They have scheduled Cain's Pre-Glenn Cath for tomorrow. All of this is happening very fast, so it is of course very scary for Catherine and Brad. They will stay overnight in the hospital after the cath procedure. If the cath shows that the Glenn is needed now, they will have to stay in the hospital and Cain will unfortunately undergo this second heart surgery sometime next week. The Glenn is normally performed between 4 and 6 months, but little Cain may have to experience it a little early. Please keep them in your prayers!! Hopefully, Cain's cath will show that he can wait on the Glenn for several more weeks.

It would be great for you to visit Cain's blog and offer your encouragement to Catherine and Brad right now. I'm sure they would really appreciate it! Their blog address is: http://www.clinkscalesfamily.blogspot.com/.