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!!!

Thursday, November 27, 2008

Update from the Doctors and Turkey day

Colby had a follow up with his surgeon on Nov 17th. We were a little nervous going into the appointment since his weight gain hasn't been great since surgery. We were concerned if that was an indication of his healing. As usual Colby was charming the nurse with his cute little smile. I think he figures if he smiles real cute then they won't stick him? After a short exam Dr. Christian said his SATs looked good and she was pleased with how his incision was healing. Overall she thought he was doing great. We asked if he was still on track for his next surgery after the first of the year. She is hoping his shunt lasts until summer to give him more time to grow. She explained to us again that the larger shunt was used to try and prolong the time between surgeries. I guess we will see when Colby wants to have his next surgery b/c he sure seems to be on his own schedule....

There have been times since his surgery that we questioned the decision to use the larger shunt. It is hard to tell if the larger shunt has made his recovery harder but if it allows him to remain stable and out of the OR longer then it will be worth it.... We just need to continue to focus on the big picture and not all of the little battles we seem to face daily.

Colby also had a follow up with his cardiologist on Wednesday the 26th. Since his feeding still haven't gotten better we were nervous going into this appointment as well. We were certain that more aggressive measures would be necessary to help him gain wait. He has been gaining 3-4 ounces per week since his surgery which is less than the 7 ounces a week he was averaging before surgery. Becca takes him weekly to the pediatrician for weight and SAT checks. Last week they suggested we put him back on fortified milk which we have tried in the past and it wasn't pretty. It took us about 2 days to remember why we quit doing the fortified last time. Our sweet little angel turns into a little monster when we add formula to his milk.... He is miserable.

As soon as Dr Liske walked into the room I asked if a feeding tube was an option. For those that have been with us for a while the tube was one of our biggest fears. So you can imagine if I am asking for it that his feeding must not be good. Despite all of the ups and downs we have been through over the past 4 months I am confident that his lack of appetite is the worst. There isn't anything worse than trying to force feed a baby. He just looks at us and grins with his lips sealed shut or he cries when the bottle touches his lips.... I'm not sure which is more frustrating.

Back to the doctors appointment.... Dr Liske didn't respond to my question initially. He went on with his examination and look at all of the data in Colby's file. After he finished looking him over and listening to his little heart he told us he doesn't think a feeding tube is necessary at this point. He said his weight gain numbers weren't great but at least he is still gaining which is great. He then looked at Becca and said "I'm not sure what it is you are doing for Colby but whatever it is must be the right thing for him". He commended her on how well she has done caring for him. I know I have said it before but I will say it again.... My wife is the BEST mom in the world. Our boys are so blessed to have her as their momma. So on this Thanksgiving day one of the many things I am thankful for is my beautiful wife and the mother she is to our boys. Doctor Liske went on to say that Colby continues to improve between each visit which was great news.

I guess the uncertainty of his progress is part of the challenge but apparently he is doing good. The doctor told us to stop focusing on his progress daily and focus more on his progress weekly. Again, this goes back to looking at the big picture. As parents we want him to have a great day everyday and that just isn't reality.

This Thanksgiving has been one filled with many emotions. As we look at our boys we see our biggest blessings. Brody continues to make us laugh each and every day with his crazy antics and Colby makes us smile every time he looks up and grins. It is in those moments of smiling and laughter that distract us from the pain and suffering Colby has already been through. I don't think a day passes that we don't look at Colby and wonder how he can be so happy despite the road he has traveled and with the road he still faces. Those little smiles are what we draw from when we begin to get caught up in the weeds of all the things still ahead. Since Colby is still on house arrest Becca and I celebrated part of turkey day apart which allowed her time with her family and gave her some one on one time w/ Brody which is always entertaining. During my time alone w/ Colby today i had some time to reflect on how God has blessed us in so many ways and and to see that we have so much to be thankful for. We never could have imagined how Colby would have impacted our lives. Take away the obvious medical issues and then you are left with the following blessings: the joy he brings, the strengthening of our faith, the support of so many family members and friends, the numerous "strangers" that have blessed our lives and we now have them as friends, the dependency Becca and I have grown to thrive on from one another, a stronger marriage, the clarity to see what a blessing Brody is, the change in perspective, the way we now treasure the little things, a greater appreciation for the mother and care giver Becca is. We have come to realize the fragility of life and therefore each and every day I am able to spend with my family is a day to celebrate with thanksgiving. Thanks to each and every one of you for your support and prayers and for your love we are thankful.

Tuesday, November 18, 2008

3 Months Old

Colby turned 3 months old on November 4th. It is hard to believe that 3 months have already passed! It is also hard to believe that he has already had 2 hospital stays totaling 4 weeks and a major heart surgery! You would think that this would make for a cranky baby, but he is the exact opposite!! He is such a happy little guy!! I think the only time he cries is when he is just completely exhausted, which is totally understandable...I'm the same way!
As far as milestones go, I think Colby is doing great! He is holding his head up really well now, sitting in his Bumbo chair, "talking" a lot, smiling constantly, and even laughing some. Jason and I really celebrate each and every small milestone. We know that each one is a step in the right direction for Colby, and it means that he is not yet experiencing those developmental delays that the doctors have warned us about. Colby is an amazing little man!

During these first 3 months of Colby's life, we have been through a roller coaster of emotions. We have experienced stress like we have never known, fear, worry, sadness, frustration, doubt...I could go on and on. The one thing that is keeping me sane, though, is seeing Colby smile and hearing him talk. It is like he is telling me that everything is okay and God is taking care of him. He is a smart baby! When he gives us his big open mouth toothless smile, I am just filled with so much joy! I thank God every day for that smile!

Colby, happy 3 month birthday!! We love you so much! You are truly a blessing from God, and you have brought all of us, even Brody, so much happiness! We are eager to continue watching you grow and develop.

Monday, November 3, 2008

Cardiologist Follow Up

Today's appointment with Dr. Liske went pretty well. His sats were 88-90%, and his blood pressure was not as elevated. The bad news is that he lost 2 ounces...he's down to 10 lb 9 oz. Dr. Liske thinks this might just be due to the increased Lasix (diuretic) dose. He may have just gotten rid of some extra fluid over the weekend. With the way he has been eating (or not been eating), though, I wouldn't be surprised if he really has lost a little. That is not what I want to see!!!!

As far as his progress, Dr. Liske said that he looks better than he did on Friday. His breathing is a little slower, his hands and feet are warmer, his liver is not as enlarged, and his color is good. All of these are good signs. We are on the right track, but Dr. Liske said it is just going to be a long and slow process. Another opportunity for me to learn patience I guess. The only real concern Dr. Liske has now is Colby's weight gain. We have got to get him eating more again!! If he doesn't start eating better, our next step would be a feeding tube. Dr. Liske doesn't think this will be necessary, though...he thinks Colby's eating will improve sooner than later. I just wish it would improve now!!! Watching my baby not eat when I know he really, really needs to is beyond frustrating for me!

We will return to Dr. Liske for another follow up the day before Thanksgiving. Dr. Liske will actually be out of the country for a couple of weeks, so I'm hoping that Colby continues to improve while he is gone. I would hate for Colby to need him and him be gone! We are very attached to Dr. Liske!

Sunday, November 2, 2008

Halloween Fun

Our Halloween Fun started with Brody and Jason going to pick out pumpkins to carve. Brody was a sweet big brother and made sure he picked out a special pumpkin just for Colby. He was so excited when he got home to show me Colby's pumpkin and Brody's pumpkin.

Our Little Super Heroes

Colby is a super hero in more ways than one! It is hard to believe that these pictures were taken not even 2 weeks after major heart surgery! He is such a happy baby and definitely a trooper!

Jason took Brody around our street to trick or treat, but I think he had more fun sitting on our front steps handing out candy to others. It was fun to see him so excited about Halloween. He definitely understands the "trick or treat" concept this year, because after lunch the next day, he looked at us and said "trick or treat" while pointing to the candy bowl. He is such a stinker!

Every year, Emilee and Kylee (Brody and Colby's cousins) and Mary Grace and Carolyne (Brody and Colby's good friends) stop by to Trick or Treat at our house. We always love to see them dressed up in their cute costumes. For some reason, we didn't get a picture of Emilee and Kylee, but they were dressed as beautiful princesses! Below is a picture of Mary Grace and Carolyne...Mary Grace was Super Girl and Carolyne was a sweet witch. Too cute!

While Brody and his cousins went trick or treating, Colby and I hung out in the house. Colby had a good time just laying on the couch in his Halloween Onesie!

Our friends, the Smiths, have an annual Halloween Party. It is always so much fun! They have games, activities, give aways, and lots of treats. Colby couldn't go this year, but Jason did take Brody for some more Halloween fun. Before they left for the party, Brody went over to Colby in his swing and gave him a big kiss. Again, he is an awesome big brother!

Saturday, November 1, 2008

First Post-Op Office Visit

Colby had his first office visit with Dr. Liske since his surgery yesterday. Our appointment was at 8 am, so it was a very early morning for all of us! As always, they checked his vitals first. Sats were at 86%...pretty good. Weight was 10 lbs 11 oz...awesome!! Blood pressure was a little elevated...not so good!

Dr. Liske asked us several questions and looked over little Colby. One interesting fact that we learned is that Colby doesn't have one murmur anymore...he has 3 murmurs!!! I guess he is already showing us he is an over achiever : ). We discussed Colby's cold and purple hands and feet, the mottling of his skin, and his rapid and labored breathing. We then went for yet another chest x-ray. After reviewing the x-ray, Dr. Liske told us he was "doing okay." This is not exactly what we wanted to hear, since he is normally very positive. Apparently, he is pretty concerned with the amount of blood flow going into Colby's lungs and the lack of blood flow that is going to his body. Colby's body is in a very difficult situation right now trying to get adjusted to the new blood flow going through his shunt. Also, the shunt is too big for him right now, so he needs to get bigger and "grow into it."

It is hard for us to believe that all of this is going on in Colby's body, because for the most part, he is a very happy and smiley baby. He is still having a tough time feeding, but it seems to be slowly improving. I'm hoping that the Acid Reflux medicine is helping with this. The bad news is that poor feeding is also a sign that his heart is in trouble. Needless to say, I am always in constant he not eating because of the reflux or is he not eating because something more serious is wrong. It's always something!

Long story short...I got the impression that we are not able to take a deep breath and relax just yet, which is what we were really hoping for after his first surgery. Dr. Liske wants to keep a very close eye on Colby and make sure his body does begin adjusting to the shunt. We go back to see him again on Monday at 8 am.

Thursday, October 30, 2008

Settling in at Home

The last few days here at home have been so nice! I absolutely love seeing Brody and Colby together. Brody must have missed Colby while he was in the hospital, because he has been so interested in "playing" with him. He even shared one of his tractors with Colby, by putting it on his chest, when he was sitting in his bouncey seat. Colby's little face just lit up with the biggest smile I have ever seen! Watching the two of them smiling together makes everything seem perfect, if only for a few minutes.

Since surgery, Colby has not been eating too well. We thought it would improve once we got back home, but it hasn't. When we try to feed him, he drinks 1/4 to 1/2 ounce and then cries like he is in pain. Since he isn't taking in very much at a time, I feed him every hour to hour and a half. It is so difficult to see him like this. My first and biggest fear was of course that maybe he isn't recovering well. So, after speaking with his cardiologist's nurse, I took him to see our pediatrician yesterday. His sats were 89%, which is great, and his heart sounded good. This is a big relief! After a quick description of his behavior while eating, Dr. Hudson determined that he has Acid Reflux. He thinks he may have had a very minor case of reflux pre-surgery, but the surgery might have irritated it and made it much more severe now. So, he prescribed a medicine that should help reduce the amount of acid in his stomach. Just what Colby needs, another medicine to take...but if it helps him to eat more comfortably, I am all for it! Surprisingly, Colby has not lost much weight through his surgery and days of not eating. He weighed 10 lbs 8 oz! My hope is that we can get him eating well again and continue to pack on the pounds before his next surgery. This has always been a big stress to me, and I guess it will continue to be a big stress for many, many months to come.

I have to say once again, that I am very impressed with our cardiologist's office. The nurse called me yesterday afternoon to check on our visit with the pediatrician and then again this morning to see how today was going. This is above and beyond, and it means so much to me!! She made it a point to call and check on little Colby even though we have an appointment with them first thing in the morning.

Other than not eating well, Colby seems to be doing pretty well. He is back to his happy, smiley self, except when we are trying to feed him of course. I missed his smile so much when we were in the hospital, so seeing it daily again is such a relief! He is such a trooper! When I look at him, I am just in complete amazement. Who knew someone so small could be so strong. He is such an inspiration to me!! Colby's smiles, Brody's craziness, and Jason's unbelievable love and support is what keeps me going each day. I am truly blessed in more ways than I deserve. I love my three boys so very much!!!

I have to show everyone what we saw when we arrived home on Monday. Brody and Colby's good friends, Mary Grace and Carolyne, made Colby a Welcome Home sign for our front door (thank you Marye!). It was so nice to see it! It made coming home even more special!

We have our first post-surgery follow up with Dr. Liske (cardiologist) tomorrow morning. We are hoping all goes well! We will keep you posted.

Monday, October 27, 2008

Colby is granted early RELEASE

Colby went before the doctor's parole board early this afternoon and fortunately they released him on good behavior. We were so excited to get the news this afternoon that we could finally take our baby home again. There is no doubt that the last 11 days have been very challenging for Colby physically and emotionally for our family. We feel so blessed to be back home with both our boys tonight.

Brody was still napping when we arrived back at home late this afternoon. After Becca and I got Brody up from his nap we told him Colby was home. He ran straight out of his room looking for Colby. As he got to the top of the stairs he asked "where Colby go". He came downstairs and ran straight to Colby's swing saying, "Hi Colby". We never could have dreamed what a great big brother he would be to Colby. As most parents do, we worried about how Brody would accept his little brother. Given the special attention that Colby would require not only during his surgeries but in general it worried us even more. Fortunately he has been amazing with little Colby. We must thank our family and friends for taking such great care of Brody while we were attending to Colby over these past 11 days. We have been blessed in so many ways and for those blessings we are grateful.

Moving forward we hope that the surgery Colby had last week will keep him stable for the next 3-4 months. The shunt should provide enough blood to his lungs during that time period as he continues to grow. We hope that since the surgeon was able to implant a larger shunt than originally planned Colby will get a little extra time between surgeries. The larger shunt should provide adequate flow to get him past 6 months old which is the prime window for his next procedure. There will be some challenges over the next couple of months as his body continues to adjust to the additional flow to his lungs. This additional flow can cause feedings to be more difficult which is what we are dealing with right now. As Becca has discussed in the past getting Colby to gain weight is a very stressful endeavor but she has done great thus far working with him therefore I have no doubt he will continue to do well in the future. He is so lucky to have such a patient and compassionate mom. Please continue to keep Colby in your prayers as we work to his next surgery.

Thanks to everyone for the enormous support and love shown to our family during these past days. We never could have done it without the loving hand of God and the amazing support structure that continues to grow around us.

Friday, October 24, 2008

Finally made it out of PCICU

It wouldn't be a good day with Colby unless there were a couple of hurdles and a few twists. Small recap of today:

When we wrote last night Colby had been released to go up to the 6th floor. We assumed that he would move up to 6 early this morning. Colby decided he wanted to make a day out of the transition. They did his gas test early this morning around 4 and of course something had to throw up a flag and his Lactate levels were again the flag. They were a little elevated so they tested them again around 6. They were back to normal at the 6 AM test. Once they got those results the room he was moving to on the 6th floor had been taken. They decided to go ahead and prep him to leave the ICU while we waited for another room. This preparation required the removal of his central line and his arterial line which had been put in for his surgery on Monday. They wanted him to go to the 6th floor with no lines except a peripheral IV. Once they began removing his lines they realized that his peripheral line had gone bad. This shouldn't have been an issue but it quickly became an issue. Colby became a "hard stick" a patient that they can't get a new IV started in. Between his nurses and an IV tech they attempted 4 times to get a new line started. After the 4th attempt they decided to call for a PICC Line which is a more permanent line and has a lower risk of infection. PICC lines are typically started by the PICC Team. The PICC team uses ultrasound to find a usable vein. They worked on Colby for a little over 2 hours with no success. The nurse called us back into the room to tell us they were unable to get a new line started. Fortunately they had given him a sedative during this 2 hour process. We later found out the sedative was necessary b/c our little fighter was not letting them stick him without a fight.

Around 6 tonight the doctors and nurses discussed what options were available. They consulted with Colby's cardiologist and decided to start a new Central Line in his groin. The decision to remove the existing central line and start a new line in his groin was based on his future surgeries. Apparently the location of his first central line involved some of the plumbing that the doctors will need for his next surgery so the cardiologist wanted to get everything out of his chest to prevent the risk of affecting his veins that are part of the next surgery. At 7 pm tonight they began the procedure of removing his existing central line and putting in his new central line through his groin. This procedure required a fair amount of pain medicine and sedation. The procedure went off without a hitch/ no complications. The procedure took about and an hour and half. He was finally ready to move to the 6th floor at 8:30 PM. 12 hours later and multiple attempts to get a new line Colby was off to the elevator....

God once again showed us the strength of our little fighter. Throughout the day Colby remained stable. His SATs never dropped and he remained pleasant. He is a trooper....

Beyond the drama that Colby was involved in we were also exposed to the fragility and the reality of babies with heart issues. As we were waiting for Colby's move this morning the unthinkable happened.... One of the babies across the hall lost its fight during a surgical procedure. Despite the emotions that we have experienced throughout our journey with Colby from his diagnosis through his first surgery it is easy for us to forget the the severity of his condition. Although we do not know the details of the fight that little baby was facing we know 1 thing for sure... That precious little baby was another families little fighter too.

The reality is that God has a plan for each of our lives and unfortunately we do not always know what that plan involves. Fortunately God's plan for Colby has protected him, strengthened him, and kept him safe in our arms to this point. As we watch out little Colby sleep tonight we are even more grateful for the his progress. We are also saddened for other families knowing that God has taken one of His little heart babies back into His loving arms. As many of you continue to lift Colby and his doctors up in prayer we also ask that we not forget the other babies and families facing this same fight. It doesn't take long in the ICU to realize how blessed each and every day is with these precious little souls.

The events of today were very stressful to us but even more emotionally wrenching was the thought of how good God has been to us through this journey. As I have mentioned before we are grateful for each and every little milestone we are able to achieve with Colby. He has blessed our lives far beyond our imagination. Through him Becca and I have been able to love like we have never loved, cried like we have never cried, and rejoiced like we have never rejoiced. I have been blessed far beyond what I deserve with Becca and our boys. My prayer is that I am able to be the husband and father to my family that they deserve. God has blessed me with so much and with those blessings comes great responsibility.

Thursday, October 23, 2008

Cleared to leave the PCICU

Sorry for not posting anything earlier today. I guess the sleep deprivation is catching up to us. Becca and I actually went home last night for our first at home since Colby was admitted into the hospital last Thursday. Becca mentioned on our ride back to the hospital this morning that she had gotten more uninterrupted sleep last night than she has since Colby was born. That stretch of sleep consisted of 5 hrs.... It continues to amaze me how well she continues to function and care for the boys with such short and sporadic naps day and night....

Leaving last night was really tough for both of us but he was doing really well so we decided to go home to swap out some laundry and make sure our bed was still in it's old place. Yesterday was a pretty good day. Colby seemed to continue to improve throughout the day. We became a little concerned at one point b/c he started running a fever which typically signifies some type of infection. In babies with heart conditions that scenario is more frightening than normal b/c of the potential harm the infections can cause on their already weak heart. As soon as they noticed his fever they immediately began running blood work and started him on some antibiotics. The initial results showed that his white blood count was not elevated which was good but they are still waiting for all of the cultures to come back to confirm that there is no infection. The typical culture times are 24, 48, and 72 hrs so we are over half way there.

We were also able to meet with Colby's cardiologist yesterday which was very comforting since he has been watching and caring for Colby since we found out at Becca's 20 week ultrasound that he had a "special heart". It was great talking with him b/c he was able to explain and clarify some of what was going on. One thing that he helped us understand was that several of the "set backs" were typical for his surgery especially since they used a larger shunt. The larger shunt allows a higher level of blood flow into his lungs which causes his body to have to adjust to the increase in blood flow. Colby is still pumping blood from his heart into his lungs plus the blood that is now passing through the shunt into his lungs. This information gave us a little more peace about some of the things that had happened since his surgery. As we met with Dr. Liske again today he explained that the shunt is a 2 sided sword in that it does allow increased blood flow to the lungs which allows his SATs to be higher reducing his blue spells but it also increases his symptoms of heart failure b/c of the increased blood flow to the lungs. As he continues to grow the flow with gradually balance out with his growth. Unfortunately as he grows the shunt will also become less effective thus causing him to have the next surgery.

Today was full of progress. Colby is starting look more like our old little Colby. His swelling has gone down considerably. His breathing has gotten better. They have weened him off of most of his IV medicines. He is no longer on the nasal cannula. Last but not least they were able to remove his chest tube. These are steps in the process to getting him out of the ICU. They cleared him to go to a regular floor earlier tonight. Unfortunately there were no rooms available so he should move tomorrow morning. Yeah.....

Yesterday was also fun b/c we were able to leave the hospital for an hour to go with Brody to play at the "dragon" park across the street from the hospital. This whole process has been taxing on us as parents for a variety of reasons but undoubtedly one of the hardest parts is being separated from Brody for such a long time. Fortunately we are surrounded by great family and friends that have shared in the excitement of keeping Brody. Someone joked yesterday that Brody thinks he is on vacation every time Colby is in the hospital. He gets to sleep away from home, go on field trips, and hang out with his little friends. Thanks to everyone that has helped ease the emotional burden of us being away by making Brody feel like part of your family....

God has truly blessed us yet again with His healing hand. If you notice the 2 pictures in this post you can see how much better he looks today over yesterday. Our prayers continue to be answered as Colby continues to get stronger. Thanks for all of the prayers....