Wednesday, September 30, 2009

Finally some sunshine!

Last week was full of rain...lots and lots of rain!! Rainy days are never fun, but they are especially not fun when we are on house arrest. We can't go anywhere, so we just have to make the best of being in the house all day. I'm just glad that we have lots of toys and movies that the boys enjoy.

After several days in a row of being inside, though, Brody was definitely ready to get outside. I was too, so we were very excited to see the sun come out over the weekend. On Sunday, the weather was perfect! We met our friends, the Rowells, at the Green way for a picnic. We also let the kids ride their bikes and roller blade. It was fantastic!

We have been outside pretty much all day for the past two days, which has been so nice. I am loving this fall weather! Brody loves to play golf and push Colby in his little car. It is a good thing that Colby likes to be pushed in the car!


When we met with Colby's nutritionist, she requested that Colby go in for weight checks every 2-3 weeks. This would help her monitor his growth and see if he is getting enough calories each day. I took him for his first official weight check on Monday, and guess what...he is gaining again!!!! He weighed 16 lb 1 oz! He finally reached 16 lbs!! I was so excited but also nervous that maybe something wasn't right. So, I asked the nurse if we could zero out the scale and weigh him one more time just to be sure. I'm sure she thought I was crazy, but that is nothing new! I am just so happy to see Colby putting on weight. I hope that this continues! I will definitely be making more "Super Shakes!" It looks like they might be working!

Thursday, September 24, 2009

Research Study

We agreed to let Colby participate in a research study at Vanderbilt before his Glenn Operation. The study is looking at developmental outcomes in babies/children with CHDs. You might remember the picture from the pre-op appointment of him with the crazy hair after they put a hat on him to look at his brain activity while listening to different pre-recorded sounds. Well, we went yesterday for his final visit with the research coordinators. They once again put the funny hat on him, but this time they wanted to monitor his brain activity while he watched one of the ladies play peek-a-boo with him. It is so funny to see him with that strange hat on, and it is even funnier to see his hair when they take the hat off of him!

The hat part only lasted about 10 or 15 minutes...that was as long as Colby was willing to sit without grabbing at that silly hat on his head. Then, after a short break, they did the Bayley Assessment on him. The Bayley is a standardized test for babies that measures developmental levels in several different areas (cognitive, language, fine motor skills, gross motor skills). I was very impressed with how well Colby did with this. He sat in my lap and participated for 1 1/2 hours without getting fussy! He did start to get sleepy near the end, but he hung in there like a champ.

I have to brag on Colby for one specific task that he completed during the test. The task was to put small cubes into a cup similar to a coffee cup. She showed him one time how to pick up a cube and put it into the cup. He then proceeded to very meticulously put all 9 of the cubes into this little cup. They were shocked that he was able to do this. In fact, they said they were pretty sure he was the first child they had seen actually get all 9 cubes into the cup. I was just amazed at how patient and determined he was to do it. He shows a lot of focus for a 13 month old!

The results that they gave us were very similar to what we already knew, considering he just did this a couple of months ago at his Neonatal Follow up visit. He is doing great in every area except his gross motor skills (rolling, crawling, walking, etc). I try to not worry about this too much. Jason and I kind of feel like this is part of God's plan for him. If he isn't crawling or walking yet, then he has a better chance of recovering from his surgery. Plus, he shouldn't burn as many calories as if he were crawling or walking, which will hopefully help him put on some weight. God truly is amazing!

I think the research coordinators plan to send me a copy of the results from this study when they finish. I have no idea what they will find, but I am happy to know that Colby had a small part in this. It would be wonderful if they could use this information to help other CHD babies in the future not suffer developmental delays. Colby will be proud to know one day that he helped other babies like himself. I know Jason and I are very proud of him already!

I have to mention that the three ladies told me several times how much fun they had working with Colby. He was his usual smiley self. He also showed them how opinionated he already his (wonder where that came from...Jason maybe???). When they showed him a toy that he was not interested in, he would push it to the side or throw it in the floor. His best part of the test was when they were using little hot wheels cars. All boy for sure!! They said that if they were measuring flirtation, he would be off the charts!! Again, wonder where that flirtiness came from? He is just so funny. I love seeing his big personality develop more and more each day. We have our hands full for sure with 2 little hams!!!

Tuesday, September 22, 2009

Oh Happy Day!

Tina, who is our surgeon's nurse, called earlier today to let us know that Colby's ultrasound was completely more blood clot! This means that we no longer have to give him those awful Lovenox shots twice a day!

About half an hour later, Mary Beth, our cardiologist's nurse, called to tell us that Dr. Doyle wants to take Colby off of his Spirinolactone (the other diuretic) as well. This means Colby is down to only three medicines in the morning: aspirin, enalapril, and axid, and only 2 at night: enalapril and axid. He is going to be one happy boy about this!

I think we are definitely going to have to celebrate all of this good news tonight. Thank you for all of your prayers. Colby's blood clot being gone is definitely another answered prayer. God is good!!!!

Glenn Follow-up appointment

Colby had his follow up appointment with his surgeon today, and it went well. Dr. Christian told us that he looks really good, which we always love to hear! She even took him off of his Lasix. We are always happy to eliminate a syringe from the daily medicine. His blood pressure is still a little high, so we will keep him on the same dose of his Enalapril for now. The other medicines will stay the same as well.

After seeing Dr. Christian, we went down for an ultrasound of Colby's leg to check on the blood clot that formed post Glenn. We haven't gotten any official word from the doctor yet, but the sonographer did tell us that we will be getting very good news. I am hoping that the news will be no more Lovenox shots.

Colby drinking his first "Super Shake"
Ingredients: Heavy Whipping Cream, Peanut Butter, Chocolate Syrup, Chocolate Ice Cream

Thursday, September 17, 2009

First Nutritionist Appointment

Colby went today for his first visit with his nutritionist. I have to say that I was very worried that she would look at me like I was awful for feeding him peanut butter, cookies, hot dogs, etc, but it was exactly the opposite. She even suggested that I start trying to get him to dip his foods into high fat/calorie dips. One example she gave was dipping hot dogs in gravy instead of ketchup. Yikes! This is so weird for me, because it is just the opposite of my mindset. I am always reading labels for the low calorie, low fat, and somewhat healthy foods. Now, I have to load his foods with heavy whipping cream, sour cream, gravy, cheeses, etc. It looks like I may need to invest in a Paula Deen cookbook. I also may have to prepare his foods separately...I don't need to be on this weight gain plan!

I left the appointment today with mixed emotions. On one hand, I want to do whatever I can to help him put on some weight. He is still under 15 lbs right now. On the other hand, I feel like a horrible mom for allowing him to eat such fatty foods. I have to I starting him off with horrible eating habits that will stay with him? I guess there is always something that I will worry about. Mommy guilt never quits!

I am very glad that we met with the nutritionist today, though. Hopefully she will be able to follow Colby closely and help him finally start putting on some much needed weight. Our plan for now is:

  • I have to complete a food journal for 3 days and fax it back to her to analyze (get a better idea at how many calories he actually consumes in a day)

  • Add at least 3-4 calorie boosters per day. Examples of calorie boosters are: adding powdered milk into puddings, potatoes, vegetables, etc, adding sweetened condensed milk to puddings, milkshakes, etc, adding gravy to foods or using it as dip, using evaporated milk in place of whole milk.

  • Add Carnation Instant Breakfast to his whole milk.
  • Continue giving him his 3-4 bottles of breast milk each day. Since he is not eating great, this milk is providing him with some much needed nutrients. Glad we invested in that deep freezer!

  • Eat at least one more snack during the day...3 meals and 2-3 snacks
  • Frequent weight checks with his pediatrician (about every 2 weeks)

  • Follow up with her in 2 months

At least we have some sort of plan now. The hard part will be just getting him to actually eat! Jason always says, "we can add calorie boosters all day long, but if he doesn't ingest any of the food, it doesn't really do him much good."

Since this whole post is about his eating, I thought I would include some recent pictures of him eating his favorites foods:

"Yo Baby" Yogurt

Donuts are his favorite bedtime snack

A spoon full of peanut butter

Tuesday, September 15, 2009

Brody's First Trip to the Dentist

Brody went to the dentist for the first time today, and he did great! I cannot get over what a big boy he is now! Where did my baby go? Before we left the house, he was saying, "I not want to go to the dentist," but by the time we left the dentist, he was saying, "I like this!" I am so happy that he had a good first experience with the dentist. I am also happy to report that his teeth look great! Good job on brushing those teeth dad!!
Thank you to Karen and Dr. Parham for making Brody's first dental experience a good one! I have a feeling he is going to be asking me when he gets to come back again!

Playing video games in the waiting room...what a great idea for a Pediatric Dental office!

Ms. Karen...she was so great with him!

Dr. Parham getting a good look at those clean teeth...We really liked Dr. Parham and the rest of the staff!

Colby flirting with the ladies as usual and happy to not be the one with the doctor's appointment today!

Sunday, September 13, 2009

Good News on Blood Work

We got a call Friday afternoon letting us know that Colby's blood work was "perfect" this time! Yay! I am so relieved that everything is back to normal. We can now stop the citric acid, which I know will make Colby very happy. He was not a fan of taking that three times a day!

We are hoping for an uneventful week. Brody has his first dentist appointment on Tuesday, and Colby has his first nutritionist appointment on Thursday. Hopefully that will be the only doctors we see this week!

I finally got around to doing the video of Colby's first year. It actually worked out great waiting, because Betsy, a friend of ours, gave us the perfect song to use. Betsy's husband, Erik, is a Christian artist. He has an awesome CD titled God in Search of Man. The song is "He is Greater." Thank you Erik for letting us use this song to reflect on Colby's amazing first year. Colby is a constant reminder that God is Greater! (visit for more of Erik's music)
You can see Colby's Video here:

Thursday, September 10, 2009

We Love Dr. Doyle

Colby had his post op follow up visit with his new cardiologist, Dr. Doyle, on Tuesday, and it went better than expected! In addition to telling us that Colby looks great, Dr. Doyle gave us 3 pieces of very good news:

1. We do not need to worry about keeping Colby on a strict low sodium diet. Yay!! It is hard enough trying to put weight on Colby without taking away so many choices!

2. Dr. Doyle has ordered another ultrasound of Colby's leg to look at his blood clot on September 21st. If there has been no change, he is planning to take him off of the more shots!!!!!! Apparently, this clot will never go away. The lovenox shots are just thinning his blood to prevent additional clotting. Dr. Doyle thinks he will be okay by just taking his daily aspirin. This makes me so happy, because I am a nervous wreck with him being on these blood thinners. Plus, Jason and I are not really too fond of traumatizing him with a shot every morning and every night!

3. Less medicines! Dr. Doyle took his Lasix (diuretic) down to twice a day instead of 3 times a day. He also lowered his Enalapril (blood pressure) dose to a normal amount, and now we can fit it all into one syringe. The less syringes the better, especially since he is getting older and wiser now. I have caught him a couple of times hold the medicine in his mouth and then spit it out when I go to pick up the next syringe. Nice! This is of course followed up with a huge grin and a laugh.

Colby's post surgery statistics:
  • weight: 14 lb 10 oz, which is down almost a pound. Hopefully, he will have an easier time gaining weight now!
  • sats: mid 80s, which is where they should stay until his next surgery.

Overall, Colby is doing amazingly well. I cannot believe how quickly he is bouncing back. I can't help but be extremely proud and thankful to God every time I look at him.

During the post op visit with Dr. Doyle on Tuesday, they took some blood for labs. We got a call yesterday afternoon from Mary Beth, Dr. Doyle's nurse, telling us that one of his levels was pretty low. They needed to do a urinalysis and start him on some additional medicine ASAP. So, I woke Brody up from his nap once Colby was up and headed to Vanderbilt. I thought this would be a quick in and out appointment, but Colby had other he usually does! We arrived at Vanderbilt about 4 pm, and they immediately put the bag on him. We went to the pharmacy and got his new medicine, played in the stage area for a little while, and then went back upstairs to the lobby. 4:30...still no pee, 5:00...still no pee, 5:30...still no pee, 6:00...we all gave up! We had to make the very tough decision to just put a catheter in. Once again, I am a bad guy traumatizing my baby, but they had to do this urinalysis.

Mary Beth called me this morning to let me know that the urinalysis looked good, which is great news! Dr. Doyle wants to stick with his original plan of giving Colby this new medicine (Citric Acid) three times a day, only giving him his Lasix once a day, and redraw his blood tomorrow morning. Hopefully the blood work will come back normal. If it does, then we will know that the level was off because of the large amount of diuretics.

Monday, September 7, 2009

Better Every Day

Since coming home from the hospital Wednesday night, we have seen so much improvement in Colby!! On Thursday and Friday, I was so worried. Colby was just absolutely pitiful. The only places he was happy on those days were in his stroller, in the car, or in his bed. We have been told that babies have a very bad headache after the Glenn, and I think that is what was going on with Colby. Poor little guy!! It is very hard to see him in pain and not be able to do anything for him. I hate that helpless feeling!!!
On Saturday morning, we finally saw smiles from Colby, and by Saturday afternoon, he was acting more like his old self. He was clapping his hands, dancing to music, waving, interacting with Brody, and giggling. I didn't realize how much I missed all of these things until he did them again. Jason and I thought that we were excited to see these milestones the first time, but I think we are even more excited to see them for the first time after this surgery.

We are hoping that since Colby is acting more like himself that his body is adjusting to the new blood flow and maybe his headaches are less painful. It is still so hard for us to believe that he just had open heart surgery a little over a week ago, and he is doing so well. God is good!!

Colby is on several medications right now...some that he was on before and a couple of new ones. It has taken me a few days to get adjusted to the new dosages, the new medications, and the new schedule of giving these medications. For now, he is taking Lasix (diuretic) three times a day, Spironalactone (diuretic) twice a day, Enalapril (blood pressure) twice a day, Aspirin once a day, and Axid (acid reflux) twice a day. On top of all of these, we also have to give him a shot in his leg twice day for his blood clot. The shot is by far the worst and the most unexpected for me and Jason. Of all the things we imagined when finding out about Colby's heart defect, this is not one of them!

Colby's diet has also been a big adjustment, because he has to be on a low sodium diet for several months. Sodium has never been something I have looked at on packages, and I am shocked at how much sodium is in certain foods. This is making meals very difficult, because Colby is a picky eater as it is. Before surgery, he loved eating refried beans, black beans, hot dogs, mac and cheese, and sliced cheese. All of these foods are unfortunately out now because of their high sodium content. Right now, he is living on yogurt and Gerber cheetos...not exactly a balanced diet! If anyone has any suggestions on low sodium toddler friendly foods for us, I would love to hear them!!!

Many of you have asked us how Brody has done through all of this, and as usual, he has done unbelievably well. While we were in the hospital, he stayed with my parents (Gacky and Granna) for the first few days, and he stayed with Jason's mom (Nana) the last few days. Basically, he was spoiled rotten the entire time!! We wouldn't have it any other way, though! Thank you Gacky, Granna, and Nana for taking such good care of our little man. He had a great time as always! Now that he is home, he is taking good care of Colby. He is always there to comfort Colby when he cries, and he is constantly asking him if he feels better now. I love it!

Colby will have several doctors' appointments in the next few weeks. His first appointment is on Tuesday with his cardiologist, Dr. Doyle. Then, on Wednesday, we will go see his pediatrician. I will keep you posted on how these appointments go.

Once again, thank you so much for the continued prayers and support. Jason and I have been blessed with some amazing friends and family! We will never be able to properly thank all of you for the encouragement and love you have provided us and continue to provide us daily. We love you all!!!!!!

Wednesday, September 2, 2009

Wow what a NIGHT

Post-Op Day 4
Sorry for not updating everyone last night. It was a crazy night to say the least. Yesterday was full of twists and turns. It was our first full day out of the PCICU. Surprisingly enough there are good and bad things associated with getting out of intensive care. We can discuss those details later. Most importantly Colby was making progress which is great. We noticed Colby was becoming more attentive and active as the day went on. In theory that sounds great and we were initially excited. The excitement quickly faded as his mood began to change. We could tell that he was becoming frustrated being in bed, not having use of one of his hands, and being the focus of strangers' attention every time he tried to go to sleep. The most frustrating for C was the blood clot "evaluations." Every doctor on the floor needed to feel his toes and look for a pulse in his little foot. He was cool with it the first 287 times. They had put socks on his feet to try to keep his right foot warm. This caused an additional step to the evaluation. Sock off, poke, feel, rub, talk, sock back on.... next foot for comparison sake. Eventually he would cry every time someone looked at his feet. The other drama surrounded his blood pressure issue. His blood pressure continued to be all over the board. The goal was top number under 100. He went from 96 top number to 155 top number.... 96 when he was asleep and 155 when he was agitated from having his blood pressure taken. The most humorous point in the day was when the doctors were doing rounds yesterday, and one of the resident doctors suggested cutting Colby's potassium dose in half. The attending cardiologist said how about you discontinue the dose and see how the boy does on his own. He went on to say he should make all the residents try the potassium to see what the nasty stuff did to their blood pressure. Needless to say the potassium dose was discontinued. We initially thought his behavior was a little funny until evening arrived and his agitation level increased. It got to the point that he wouldn't go to sleep b/c he was so agitated. We needed a change of atmosphere.... We asked for a hall pass. Oh yes I went and got the stroller and asked the nurse how to make him mobile. She hooked us up w/ a portable monitor and we went on a walk down the hall and outside to the roof-top play area. Colby was in heaven.

High point in drama for Mom and Dad.... giving Colby his first blood clot shot.... Yes, I made Becca go first b/c I am a sissy. She gave him his shot last night and I gave it to him this morning. I should have put a skirt on when I did it b/c I broke out into a sweat over a little shot to the leg for a 1 yr old that had his chest cracked open on Friday... chest tubes out on Monday.... cage fight on Saturday and I broke a sweat over an insulin needle.

We thought the night was good after we got past the shot and got the hall pass. Little did we know. It was long into the evening that we realized Colby was over being his bed and wasn't going to close his eyes again as long as people were still touching his toes. We ended up spending most of the night literally walking the halls of Children's pushing his stroller while he sat w/ his feet propped up spread eagle living the dream. We came to the conclusion that in his mind bad things don't happen to him in his stroller and if he was moving then nobody could bother him. This exercise program went on through the night.... At one point we paced the hall for over an hour at 2 AM to keep him happy and peaceful. Daddy needed some sleep. The nurses thought he was sooooo cute apparently they couldn't hear him when the door closed and we tried to put him in the bed.

Long night no sleep... no update

Post-Op Day 5

New day with tired parents and cranky baby. The hall walks continued all day today. My favorite part of the day was getting a training session on giving Colby his shots. Lets be honest I had envisioned a lot of things during this hospital visit but me sticking a needle in Colby's leg wasn't on the table of possibilities. Colby also got to meet with a physical therapist today... not very productive. She would look at him and he would give her a dirty look she would touch him and he would scream. I guess he thought she was there to look at his toes. The highlight to the afternoon was Colby having to give blood for the second time today to check his blood clot medicine levels. He was really excited about getting poked again... remember he is still agitated and did not sleep last night. They decided that since he was mad they should go ahead and remove the stitches from his chest tube incisions.... the day kept getting better.

I think things were more peaceful in the PCICU. Hopefully he will be able to get some rest in his own bed tonight at home.....

Thanks for continuing to pray and send so many wonderful words of encouragement. Thanks for all of the wonderful meals... if you haven't fed us yet there are plenty more opportunities.... just kidding. We are so very blessed to have the most amazing network of family and friends that have lifted us up over the past 5 days and made this experience bearable. Thank you and we love you.