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.

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.

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!

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!

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 worry...is 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.

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.

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.

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.

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....

Still in the PCICU

Colby decided today that he wasn't ready to leave the intensive care unit. As many may remember back when he was in the NICU the night that he was moved to the step down unit and then decided he wasn't ready to leave his NICU nurses.... Well he kinda did the same thing again today. Earlier today several of the doctors and nurses mentioned moving Colby out of intensive care and up to the cardiology floor. We were pretty excited about his progress. It seemed as though he was progressing beyond every one's expectations. Mid day today he decided that he wasn't ready to go so he decided to slow the doctors down.
We started noticing throughout the morning that he was acting uncomfortable. As the morning progressed we noticed more signs of discomfort. He was laboring more in his breathing and wasn't resting very well. These were all signs that something wasn't right. As we continued to notice the physical signs his blood work began showing some internal signs that everything wasn't progressing as it had through the night. He was continuing to swell and his breathing continued to seem labored. He sounded very congested which caused him to be uncomfortable. By early afternoon several of his tests showed that his blood needed to be tweaked a little more. One of the readings was no longer going down rather it was going up. That specific reading shows the oxygen level along with acid levels as the blood is disbursed throughout the body. The doctors were concerned that he wasn't pumping enough blood to all areas of the body. They explained this to be typical of babies that have undergone this type of surgery. They started him back on some of the meds he was on yesterday to reduce the strain on his heart to distribute blood throughout his body. They also continued doing suction through his nose into his lungs to try and decrease the labor involved in his breathing. It is now 12:30 and they have put him back on a nasal support system, run another chest x-ray, and began some additional respiratory treatments.
He is once again resting and breathing a little more normal. This is a little bit of setback but typical for babies that have undergone a recent surgery. They had to give him another blood transfusion as well. We are still very pleased and excited about his progress. As many of the doctors have explained these revelations aren't really a negative rather they cause them to slow down his weaning process. We continue to pray for strength and comfort for little Colby. The hardest part of today was seeing him so swollen and watching him be uncomfortable. It is pretty sad to watch him cry given these circumstances because it is a really faint cry that appears to hurt. They continue to give him morphine to keep down his discomfort and allow him to rest peacefully.
Hopefully Wednesday will prove to be more positive from a progress standpoint. Becca and I have discussed several times throughout the day how he has had more x-rays, tests, and procedures than most adults we know. He continues to amaze us with his strength and determination. Many have asked how Becca and I continue to deal with the stress of the situation. Each time we think about that question we look at our sweet baby and realize that the emotional strain doesn't even compare to the physical challenges that little C has met with sheer determination. He inspires us more and more each day to realize how fragile life is. I can't imagine the emotional and physical strain that he must be experiencing yet he is still able to look into our eyes with a smile and look of unconditional love. His innocence and strength make me realize how weak I am. I never thought I could be so motivated, inspired, strengthened, and humbled by such a 10 week old baby. Colby we love you very much and cherish each and every moment that you give us.