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.