Wednesday, December 31, 2008

time to catch up....

sorry we have been absent from updates for the past 2 weeks. i must admit that i am partially responsible for this. i have had the opportunity to spend a lot of time at home these last 2 weeks which has been a distraction to Becca.

i will start with our most recent doctors appt. Colby had a cardiology appointment on dec. 22 we were looking for an early Christmas present..... we kinda got one? Colby still had not gained any additional weight which continues to cause concern. the cardiologist didn't want to do anything through the holidays so he sent us home with some diet changes and medication changes. Becca talked with the nutritionist and she suggested adding "corn oil" to his bottles to increase the per oz caloric intake. Colby also stopped taking one of his heart medicines that can act as an appetite suppressant. both of these changes have proven to be good. his overall intake has gone up and he seems to be adjusting well. the real question will be is it enough. we have another follow up with cardiology on jan. 7th. if he has not gained any weight at this appointment then the doctor will admit him into the hospital that day to have a feeding tube installed. this typically relates to a 2 day hospital stay to get it regulated and to train us on how to use it. we are hoping and praying that this is not necessary but if it is needed to get him bigger then we support it 100%. the overall tone of the appointment was good. aside from weight gain Colby is looking pretty good. the other blessing was that he didn't need to have anything done over the holidays.

next i will move on to Christmas.... what a time to celebrate. this Christmas was probably one of the best i have ever had. we were so excited to actually get through Christmas without a hospital visit. it is amazing how the past year has changed our perspective. the other great thing about Christmas this year was the time we were able to spend with our families. the hardest part of Colby being on house arrest has been the holidays. a lot of our family members had not seen Colby in person since he was born b/c he never leaves the house.... that all changed this Christmas we got approval from the cardiologist along with some rules and we hit the roads as a family to celebrate this season together. it was great.... i must say thanks to everyone for respecting Colby's personal space and looking from a far to ensure he didn't catch any germs. it sounds a little like the 3 wise men "from a far"..... anyway family was definitely the focus of this Christmas for us.

Brody would probably disagree. he would say that his tractors and choo choo train were the the tops this year. it was really fun to watch him with family and to watch him experience his first Christmas of understanding presents and Santa. he became pretty intrigued with the big guy in the red suit this year.... Colby didn't really pay much attention to much beyond the noise and the lights. but it was great to watch Brody show Colby all of his new toys and he also helped Colby open his toys. it is still funny to watch Brody go into the play room and identify Colby's toys and his toys.... he is the best big brother ever. as many of you know we were pretty fond of Brody prior to Colby being born and some might even say we spoiled him a little. well I'm not sure how accurate that theory is but he has absolutely surprised us with how good he treats his little brother. i cant imagine what it will like as they get older especially if anyone tries to pick on his little brother there might be a little drama when that happens. Christmas was truly filled with blessings and reasons to celebrate this year. despite the health issues Colby is dealing with we truly feel like we are blessed with 2 of the greatest kids.

next topic..... many of you have sent cards and calls asking what can we do to help out with Colby. well we finally have something that each and every one of you can do to help. we are planning a blood drive in honor of Colby. Colby required several blood transfusions during his last surgery so we feel like we need to help replenish the stock at the red cross so the next little heart that needs an emergency transfusion will have the necessary blood just as Colby did. we are trying finalize the remaining details for this but we have the preliminary framework in place. the blood drive will be sat. february 14th from 9-1 or 10-2. the location will be Hendersonville Church of Christ. the red cross has given us several goals that we must commit to meeting for this event to be a success. the first goal is participation we need to have a minimum of 75 committed to donate. based on the overwhelming response and support we have seen over the past months we are very confident that we can surpass that goal easily..... the second goal is to get some volunteers to help work the drive itself. we will have a couple of areas that need to be staffed and we are looking for some volunteers to help us fill those needs. if you are interested in volunteering or donating or both then please let us know and we will pass along the details as they are finalized. we are in the process of getting link set up for donor to visit to sign up for a time to donate blood so you don't have to wait in line.... we will post that as soon as it is available. please mark your calendar to save some time on feb. 14th to help us in making this blood drive a success. we know as we look towards Colby's future operations that the need for blood is one that is never completely filled. you may also wonder why we chose feb. 14th? a couple of reasons: valentines day, it's a Saturday, and most importantly it is congenital heart defect awareness day. we figured this would be a great day to celebrate Colby's successes thus far as well as provide some much needed blood for the may other babies and children that are dealing with a lot of the same issues Colby is dealing with.

thanks for your continued support and prayers.... happy new year and don't forget february 14th

Wednesday, December 17, 2008

What?!?!?! Please weigh him again!

Well, today's weight check did not go well!! Little Colby moved in the wrong direction on the scale. He lost 4 oz, so he is now down to 11 lbs. I was so shocked that I actually did ask the nurse to weigh him again. I just can't believe that he lost ounces when he has eaten the best he has ever eaten this past week. He also has a little belly on him now! I don't really know what to make of this weight loss! Dr. Hudson did not seem too concerned, but he did actually come in to listen to his heart to make sure everything sounded good. Fortunately it did, and his sats were good at 87%. Dr. Hudson just said his little body works so hard because of his heart that he requires more calories than the average baby. I do realize that, but it doesn't make it any less frustrating!

I'm just so glad that I have Jason! He is truly an amazing husband and dad! Jason is always so positive, and he helps me to take a step back and look at the big picture. Colby is eating much better now, he is happy, and he is doing great overall. I have to focus on these positives and not obsess over the ounces on the scale. We will just pray for a better weight check next week.

Neurology Appointments

Yesterday was a busy and tiring day for little Colby. We arrived at Vanderbilt at 1:00 and did not get home until 5:00. I'm just glad that the MRI that was scheduled for 10 am was cancelled...that would have made for an incredibly long day! Apparently, when they originally scheduled the MRI, they did not arrange for a cardiac anesthesia team. Since he is a heart baby, the regular anesthesiologists could not (or would not) sedate him. So, they called me Monday afternoon to tell us we would have to cancel it for now. I was extremely happy about that! After speaking with Dr. Barnes, our neurologist, we have decided to postpone the MRI until after Colby's next surgery. We probably won't even think about it until he is around 18 months. Yeah!!!

We did still have his EEG yesterday. That is an ordeal to say the least. This is a test where they attach several (and I mean several!) leads all over his head with some sticky gel. Then, they wrap his head tightly to hold all of the leads in the correct place on his head. Colby did great while he was attaching the leads and wrapping his head, but after a few minutes of having to stay still and wear his crazy "hat," Colby decided he was done. He cried for what felt like forever. The poor little guy was miserable and completely exhausted. I can't believe that they expect a 4 month old to be still with all of that on his head for 20 minutes to an hour. Oh, did I forget to mention that they also want to have some of the test record awake activity and some sleep activity. We actually did finally get him calmed down and asleep. Then, the tech said, "okay, we will record 4-5 more minutes of him sleeping and then I need you to wake him up." Nice...we just got him to sleep and now you want me to wake him back up!?!? Fortunately, Colby was smiley as always when we woke him up. He is such a trooper!!!! After the test was complete, the tech pulled all of his leads from his head and attempted to wash out the gel. That stuff is so sticky!!

We then met with Dr. Barnes. He brought us the good news! Colby's EEG was completely normal!!!! There was no seizure activity at all! We are thrilled with this news! What a relief! Dr. Barnes then examined Colby and was very pleased with his eye contact, head control, ability to push up while laying on his stomach, and his smiles and coos. Dr. Barnes feels really good about the progress Colby has made. He thinks Colby should be seizure free for the next few years. He may still experience some problems as he gets older, but that will all depend on how much (if any) damage was done to his brain when he had the seizures. The MRI that we do when he is older may help us determine more information, but for now Colby is looking good! We will follow up with Dr. Barnes again in 6 months.

Below is a picture of Colby with his crazy "hat." I'm sure you can understand why he was not happy! We are just glad it is over!

Monday, December 15, 2008

Brunch with Santa

Jason, Brody, and I went to Bluegrass on Sunday to have brunch with Santa Claus. We had such a great time! The food was delicious! We all ate way too much, but since it is the holidays, it's okay...right? Brody was excited to sit with Santa again and tell him exactly what he wants for Christmas....tractors. I can't tell you how many times Jason and I have heard, "I want tractors." Brody was funny when Santa put him down. He just kept standing there by Santa saying, "I want that tractor," pointing to the fake presents under the Christmas tree. He couldn't understand why Santa wasn't giving him a tractor. It's not easy to explain to a 2 year old that he has to wait until Christmas, because Santa Claus comes on Christmas Eve to deliver the presents. We finally told him he could go make his ice cream sundae now, and thankfully, that was the end of that! I told Jason that Santa Claus better bring this child a tractor, or we will never hear the end of it!!!

Little Colby stayed home with Granna (aka Poogie). We look forward to next year's Brunch with Santa when Colby can come with us!

Saving Little Hearts Christmas Party

On Saturday night, we took the boys to the Saving Little Hearts Christmas Party at Vanderbilt Children's Hospital. Saving Little Hearts is an organization for children with congenital heart defects. Jason and I have really enjoyed being a part of the group since finding out about Colby's heart defects. It is always nice to be able to talk to other moms and dads about their experiences with diagnosis, surgeries, ongoing care, eating issues, etc.

The party was a lot of fun. It was so nice to have a party that Colby could actually attend. We thought we would be safe taking him since it was at the hospital!! Brody had a good time eating pizza, a cookie, seeing Santa Claus and Ronnie the Raccoon, and getting a treat from Santa. Colby was great, too!! He even finished a 4 oz bottle while we were there...I think he was showing off! We were really excited to see our cardiologist, Dr. Liske, and meet his family. He is such a nice person, and we are so glad that he is Colby's doctor. He even made the comment that Colby was looking a little chubby!!! We like chubby!!!

I think the best part for me and Jason was seeing all of the other "heart babies," that are now older kids, running, playing, and just being kids! It is so encouraging for us! I know that next year Colby will be right there with them...I can't tell you how happy that makes me!!!

By the way...Saving Little Hearts puts together an annual calendar with pictures of lots of heart babies, kids, and adults. Colby's picture appears in March 2009! You can check it out and even order one at the Saving Little Hearts Website. You can also make donations to help with Surgery Care Packages. Your support of Saving Little Hearts is greatly appreciated by us and other heart moms and dads!! Please visit their site!

Wednesday, December 10, 2008

An Ounce a Day...Yeah!!!

Colby's weight check this morning went great!!! He is now 11 lb 4 oz, which is up 6 oz from last Wednesday afternoon! We are so excited!!! We also hope that this continues! His sats were also great at 88%.

I wanted to thank everyone for the prayers for Colby's eating. God is definitely answering those prayers! The last few days, Colby has really been picking up with his eating taking in more ounces each day. This is so encouraging for me and Jason! We also tried out the rice cereal, and he seems to actually like it...he at least doesn't mind it. He is not eating a lot at one time yet of course, but he is getting the hang of eating from the spoon, which is half the battle! Go Colby Go!!!! Here are a couple of pictures from that first cereal feeding...

Tuesday, December 9, 2008

Hendersonville Christmas Parade

On Sunday, we all went to the Hendersonville Christmas a family!!! It was so nice to be able to take both boys! The Hendersonville Parade is a tradition that Jason and I started a few years ago, even before we had Brody. We always go with our good friends, the Rowells, and this year was no different. We hope to keep up this tradition for many years to come!

Mary Grace, Brody, and Carolyne all bundled up in the back of the Rowell's car waiting for the parade to begin.

Colby waited patiently for the fun to start.

Brody had so much fun sitting with Jason watching all of the parade floats and bands! It was great seeing him excited about the parade this year. He was really excited when he realized that all of the parade participants were handing out candy!

Colby and I watched the parade from the back of our car...we had to keep our little munchkin warm!

No Christmas Parade would be complete without seeing Santa Claus, but I don't know if Brody was more excited about seeing Santa or seeing the Fire Truck he was riding on!

Little Colby was exhausted! He fell asleep in the back of the car before seeing Santa...maybe next year!

Saturday, December 6, 2008

4 Month Well Visit

On Wednesday, Colby went to the pediatrician for his 4 month well visit. It seems like just yesterday that he turned 3 months! I guess time really does fly when you are having fun, and yes, despite all of our frustrations and stresses, we are having so much fun! Colby is just full of personality and makes us smile every single day! He is an awesome baby!

Our visit went really well. It is always a relief to hear that Colby is still right on track with his development, especially after our seizure scares. Colby is rolling from his stomach to his back regularly now, rolling from side to side, loves to play with and study his fingers and hands, laughs and giggles, LOVES attention, holds up his chest when he is on his tummy, can sit up with support, and reaches for and even grasps some objects (especially his paci!). Dr. Hudson was very impressed with Colby's "social smiles..." I think Colby smiled and cooed at Dr. Hudson the entire time he was examining him! Colby continues to impress us each and every day!

The bad news of the visit was Colby's weight gain. He only gained 1 oz, which was very disappointing for me and Jason! Last week, Colby ate the best he has eaten since surgery, and he still only gained an ounce! Aaaahhhhhh! I guess we are just going to have to remain patient and continue to pray that his eating and weight gain picks back up soon!

Dr. Hudson didn't really seemed too concerned with this small weight gain. He was just encouraged that he is continuing to gain. Apparently, he is growing consistently and proportionally. His height and weight are around 5% on the growth chart and his head is around 10%. I guess he is just a small baby...our little peanut!! Colby is now 22 1/4 inches long, which means he has grown 1 inch in 2 months. His weight is 10 lb 14 oz, which is a 14 oz gain in 2 months...I guess that is not too bad considering what he has been through these past 2 months. His head circumference is now 15 3/4, which means it has gotten 3/4 of an inch larger.

Unfortunately, Colby had to get his 4 month immunizations along with his second Synagis shot. The Synagis shot is only given to high risk babies to help prevent them from getting RSV. He will get one Synagis shot each month from November to April. He did okay right after these shots, but the next day, he was miserable!! He spent most of the next day sleeping. He was just so sleepy, and his little legs were so sore! I'm happy to say that he is doing much better now!

Dr. Hudson gave us the go ahead to start some rice cereal. I can't believe that Colby is already old enough to start solid food!! Who knows if he will be able to eat it, but if he can, maybe it will help him gain a little extra weight. We can always hope!!

Colby will continue to go to the pediatrician's office once a week for weight and sats checks. We have our next cardiology appointment with Dr. Liske on December 22nd. On December 16th, we have to take Colby back to the neurologist for follow ups on the seizures. That will be a long day. We have to go in around 9 am for his MRI, which he will have to be sedated for. That is followed later in the morning by an EEG, and then we will finish up that afternoon with an examination by Dr. Barnes, the neurologist. We are hoping that after this appointment, Colby will be cleared by neurology. I guess we will just have to wait and see what the MRI and EEG show, though.

We will of course continue to keep you updated. Please keep Colby's eating in your prayers!! Our little peanut needs to put on some pounds!!!