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.

The Morning After

As I sit here looking at my little Colby, I am in complete amazement of him!! He is such a tough little guy and definitely a fighter! He is only 10 weeks old, weighs only 10 lbs, and has already been through a major surgery. I didn't have any surgeries until my C-Section with Brody at 26! What is more impressive to me is how well he seems to be recovering! He is incredible!

The doctors are very impressed with him as well. So far, he has had no real concerning things happen. He did get a low grade fever and run high on some of his levels in his blood (lactate level), but both of those are supposedly normal after this surgery and are now improving. The most concerning thing to me (not to the doctors...totally normal) is how swollen he is. He looks like a marshmallow man laying there! He is also pretty irritable (understandably), but it is incredibly hard for me and Jason to just watch him lay there uncomfortable or even in a little pain. There is just not much we can do for him right now, unfortunately. It is a very helpless feeling...one I'm not good at feeling!

As far as eating, he has started taking a little milk in a bottle. He has had maybe a few ounces, but it has been hard for him to eat because of the congestion in his throat/chest...another normal thing after this surgery. They did just deep suction him, so maybe this will help some and he can eat more later. Eating should definitely make him feel better!

I forgot to mention that he is breathing room air now (no more oxygen needed). On room air, his sats are in the upper 80s and 90s!! This is great...we are back to where we started. They took him off of the heparin this morning and switched him to baby aspirin to thin his blood. He will probably go home on this. For his pain, they are still giving him Tylenol and Morphine. Other than that, he is on no other drips/medicines. Pretty good!!

Believe it or not, the surgeon told us this morning that they will most likely move him to the floor later this afternoon. This would mean he is out of Critical Care! She thinks his chest tube may come out tomorrow or Thursday, which means we may be headed home Thursday or Friday! Again, Colby is recovering so great!

The nurses keep telling me how awesome he looks and well he is doing. I am glad that they keep reinforcing this to me, because as his mom, I just feel like he is not doing well at all. It is so hard to see him like this! I just want to pick him up and love on him!!!! Hopefully we will have a chance to do that a little later today.

We'll try to post a little later this afternoon to keep everyone updated, especially if we do get moved to the floor. That will be a big step in the direction of going home!

Post Surgery

We have been blessed today for sure! Colby is doing well so far. He is in the Critical Care Unit now receiving excellent care from an awesome team of nurses! He is pretty excited b/c he is on a 1:1 nurse ratio so he has all of their attention. He still has his breathing tube in, but he is actually breathing on his own at the moment. He is kind of getting frustrated with the tube at this point. They have given him a sedative to help with this discomfort. They are hoping to extubate him sometime tonight if the next testing they do comes back with good results. Once he is extubated, they will wait 4 -6 hours and then let us try to start feeding him again. I know he will love this!

We just spoke with someone about the surgery, and they told us that because of Colby's good size, they were actually able to get a bigger shunt in place. This will hopefully give us additional time to "fatten" him up before the Glenn is needed. The longer we have between surgeries the better! As I have mentioned many times before as a result of Becca's determination Colby has exceeded all of the doctors expectations with his growth and development.

Colby did end up needing some blood once he got into the room, but I have been told that this is normal and nothing to worry about. It just sounds so scary to me knowing that he had to get someone else's blood. His chest tube is still in and will remain in until at least Wednesday. He is not requiring any additional oxygen right now, which is great! His sats are actually in the low 90s right now.

When we walked into the room, it was very overwhelming. It is one of those things that you try to prepare yourself for, but I don't know that anything could prepare a parent to see their baby on so many machines and having so many tubes. To be honest, though, we were just so happy to see him we were able to look past a lot of the "scary" things. We noticed immediately that his color looked so much better. His incision is on his right side, and it is much smaller than we expected.

Since we began writing this update some things have changed for the better..... They have been able to extubate him. He is no longer on the ventilator and they have been able to remove the tube from his nose as well. Currently he is breathing on his own with just a little bit of oxygen..... This is huge for such a short time after his surgery. We are so amazed with Colby. He is so strong to be so little!

Despite the magnitude of today's events Becca and I were at peace knowing that God was present with Colby in the OR. As we sat in the waiting room this morning waiting for updates from the OR, surrounded by family and friends, a friend asked how many e-mails and text messages we had gotten so far. It was really overwhelming to think about it, because we were continually uplifted throughout the day by the many messages that we both received containing personal prayers, scriptures, and thoughts. No question that the strength we have been blessed with is a result of God's presence, along with the presence of the many different people He has put in our lives. The kindness and love shown can never be re-paid nor will it ever be forgotten. Thank you....

Out of Surgery

Dr. Christian came out and talked to us about 15 minutes ago. The surgery is over, and she said that Colby did great! They did not even have to give him any blood yet. He is a little anemic, so they may have to eventually give him a little blood later...we will see.

They are bringing him back up to the PCICU (Pediatric Cardiac Intensive Care Unit) now. It will take them about another hour to get him settled into his new room. Then, we will get to see him...finally! We are so eager to see him, but at the same time, we are extremely nervous. He will still have his chest tube, breathing tube, etc. No one ever wants to see their baby hooked up to numerous tubes and machines.

Dr. Christian said that he may be able to get his breathing tube out today or tomorrow and the chest tube should come out Wednesday or Thursday...if all goes well.

Thank you for your prayers, comments, emails, etc. We are so thankful to all of you for your support!! You have definitely helped us make it through this tough day!

We will post again later after we see our baby boy.

In Surgery - Update 2

They just called us from the OR and said that the shunt is in. They have to monitor it for a few minutes to be sure everything is working properly, and then they will start closing in a few minutes. Once the surgery is complete, Dr. Christian (our surgeon) will come out to give us all of the details.

Thank you again for the continued prayers!!

In Surgery - Update 1

Colby was taken back to the Operating Room around 7:30 this morning. I can't even describe what a horrible feeling it was letting the anesthesiologist take him away from us. So many things going through our minds, but we are doing our very best to stay as positive as possible.

We just received an update from the OR that he went to sleep fine, all his lines are in, and the incision has been made. They told us that he is doing great so far. They will call out to us with details every hour.

Please, please, please continue saying prayers for our little Colby, the surgeons, the anesthesiologists, and everyone else involved in caring for Colby during this time.

We'll keep you posted as we find out more.