Colby's First Visit to the Cardiologist Office

This morning, we went for Colby's first clinic visit with Dr. Liske. All in all, it went pretty well! Colby is such a trooper...he didn't cry once! To start the visit, the nurse got his weight and height, did an EKG, and checked his sats. Then, Dr. Liske came in to check him out and speak with us.

For starters, Colby's pulmonary valve is continuing to narrow. This is good and bad. It is good, because as it narrows more, his congestive heart failure will improve. Congestive heart failure is mine and Jason's least favorite term...it sounds awful like his heart is just going to stop working. This is not what it means, though. In this condition the heart doesn't pump blood well enough for the body to get the nourishment it needs for normal work and activity. When the heart can't work as it should, fluid can build up in the lungs, causing labored breathing. Basically, congestive heart failure causes Colby to become very tired easily, have rapid or labored breathing, and have difficulty with feeding. This explains so much of what we have seen with Colby since coming home!

As I said, his pulmonary valve narrowing can also be bad, though. If it narrows too much, Colby can have some cyanosis (blueness). The blueness is caused by a lack of blood flow to the lungs. If this happens, then Colby will need a shunt procedure to improve the blood flow temporarily while we wait for him to get old enough and big enough to face the Bilateral Bidirectional Glenn (his first open heart surgery). We don't know if this will be necessary yet or not. We are just in a waiting game for now to see if it will narrow the right amount and then stop (which means no shunt) or if will narrow too much (which means the shunt). To monitor this, we will have weekly sat checks at our pediatrician office and regular follow ups with the cardiologist. In fact, we go back to the cardiologist in 2 weeks. His sats have dropped some since leaving the NICU. Today they were around 86 as opposed to the mid 90s. Dr. Liske wants to see them stay around 80 and go no lower. Now, I will be nervous every week when we check his sats!

Colby has gained some weight...he weighed in at 7 lb 1 oz today. While it is encouraging that he is gaining, it is discouraging that he is not gaining quite as rapidly as Dr. Liske would like for him to. With these heart babies, it is imperative that they get as big as possible before facing these surgeries! Again, Colby is having a hard time gaining because of the congestive heart failure. Taking his bottle is such hard work for him! He is burning calories trying to take in calories...as you can imagine, this doesn't work out so well. So, to help with his weight gain, Dr. Liske has instructed us to fortify my milk with formula. A nutritionist spoke with us today about how to do this. We just have to add a teaspoon of formula to 3 ounces of the breast milk. This takes my milk from 20 kcal/ounce (normal calories in breast milk) to 24 kcal/ounce. If he does well on the 24 kcal/ounce for 3 days, we are going to increase it to 27 kcal/ounce. Hopefully this will really help us fatten him up!

As for Colby's circumcision, it has been postponed temporarily! Dr. Liske wants us to wait until after his Glenn operation (the first open heart surgery). He thinks he will be much more stable and able to deal with this at that point. This will make him between 4 and 6 months old before we can do it, but the good news is that a urologist can do it and use sedation at that point. We are all about sedating him to have this little procedure done! Of course, after going through an open heart surgery, a little circumcision may not seem so bad to Colby.

I guess we are all doing well! Colby has been exhausted since we got back from the cardiologist this morning. Of course, I am pretty exhausted too, but we are all hanging in there. Tonight, we are planning to take big brother Brody out for a Birthday dinner!!! (I can't believe Brody is 2 years old today!!!!) Dr. Liske said as long as we keep people from touching Colby and keep him away from kids, we should be okay. With Colby's heart problems, he is not able to handle sickness like a "normal" baby would. We will have to be very careful with him for a long time...we need a little bubble to put him in! If you know me and how anal I am about germs, then you know this shouldn't be much different than I was with Brody!