Wednesday, February 27, 2008

Some Updated Pics and a Cardiologist Visit







On Monday, Laura and I took Cole to see his Cardiologist, Dr. Bensky. Everything is looking great according to the Doc - color, size, etc.

His current weight is 11 lbs, 11 ozs. Dr. Bensky commented that he has gained approximately 1 pound per week since he has been at home which has put us on the "fast track" to his second surgery. Initially, we were told that his second surgery would be when Cole was 6-8 months old and the new estimates are that he could be ready as soon as the end of April. This is good news for Cole because it means that he is growing and getting stronger more quickly then they had thought and the bigger and stronger he is, the better he can handle the second surgery and recovery. However, it is not as good for Mommy and Daddy who are still paying hospital bills from "surgery uno."

At this rate, we should have most of the bills paid by the time he enters college. Cole is like Texas....everything is bigger in Texas....his size, his hospital bills, his eating, and his "unusually large phallic." We are now considering ammending his current nickname, "Hoss," into "Hoss Texas Ranger." Any and all feedback appreciated.

Well, Ava is waiting for us to "play in her closet" so we are gonna run for now. God Bless.

Matt and Laura

Wednesday, February 20, 2008

Second RSV Shot




Laura took Cole in for his second Synagis shot this past Tuesday. Synagis is a series of shots that help ward off RSV. They are VERY expensive and in Cole's case, are covered by insurance, because of his condition. Also, he was born at just the right time to have the shots covered by insurance. This is just another example of the Lord intervening in this situation because when we say these shots are expensive....we mean expensive. As in $1,500-$2,000 per shot and 3-4 shots are needed.

Anyway, the shot went fine. Cole's updated measurements are 11 lbs, 4 ozs and 22.5 inches long. This means that Cole has gained 3 pounds in his first month at home (0.75 lbs/week).

After examining all of the info in Cole's chart, Dr. Cook said "if I did not know he had *insert all heart defects here* I would not know that he was a heart baby with these problems."

Dr. Cook also checked Cole's breathing and commented on how great his color is. This is a big deal because most heart babies look very tan (referred to as a "blue baby" even though they are not blue), whereas Cole looks a normal shade of pink.

The Bible says in James for us to consider it "pure joy" when we face trials because it helps build patience and perseverance. From talking to other parents of babies with heart conditions and seeing many other scenarios, we get to see "what could have been" for us. These people are not folks that have had tragic outcomes necessarily, just more "normal" ones. They have experienced the types of things that the Doctors told us to expect with Cole and thus far, we have been spared. This reminds us constantly how faithful God has been throughout this trial.

Lastly, I apologize for not updating the blog more frequently. Since he is at home and doing well, there is really not all that much to update on a day to day basis. However, rest assured, that if something changes, we will update the blog.

Thanks for reading and God Bless.

Saturday, February 9, 2008

One Month Old!


This past Thursday was Cole's 1 month birthday! It seems like it has been 6 months since he was born and since he looks 6 months old and eats like a 9th grader, we tend to lose track of time.

He is doing very well - better than anyone expected. He is holding his head up on his own already and can almost roll over onto his stomach. He is very strong for his age and he will need that strength later on in life. Cole is also very alert - when someone enters the room and he hears their voice, he immediately turns and looks at the person as if to say "can I help you with something?"

Laura and I are trying to find a nickname for him. Ava's nickname was "chubby" when she was young and it later morphed into "Blondie McGoo" since her ears look like satellite dishes on the sides of her head. Well, Cole has these little wrinkles on his forehead that become visible when he raises his eyebrows...so we are considering "wrinkles" as his early nickname. We also like "Wrinkles McGee" and "Hoss." Ava's favorite is "Hoss" because she can say it clearly.

Sleeping is not going as smoothly as it once was. Our plan so far has been that I take the midnight shift since I am usually still awake and that leaves Laura with the 4 am shift. Our thought process was that Laura could go to bed early (around 9 pm) and sleep until 4 am and I could go to bed at 1 am and sleep until 7 am. This plan works pretty well, but sometimes there are "hiccups," pun intended.

Thank you all for your cards, gifts, meals, visits, e-mails, comments, etc......we appreciate it all and it all means so much. We will try to update this blog to keep you all informed.

God Bless!

Saturday, February 2, 2008

Cardiologist Visit - Check Up






































*DR. VISIT*
This past Thursday, Laura took Cole to see Dr. Bensky for a check up. Of course, everything checked out perfectly. Dr. Bensky commented on how well Cole has recovered and informed us that his second surgery will be in the next 3-6 months. The reason for the variability is because the timing of the surgery will be dependent on how fast Cole grows. The shunt that Cole has inside of his heart is a small piece of gore-tex. Imagine a small cylinder that has a diameter of 0.8 mm. As Cole and his heart grow, the small shunt becomes obsolete. When this happens, they will schedule the second surgery.

*THE SECOND SHUNT*
There has been some confusion on our part about exactly what happens at the second surgery. Initially, I was told that they would put in a larger shunt which I assumed would be just a larger piece of gore-tex similar to the one he has now. I assumed wrong. What will actually happen is that the surgeons will use part of Cole's existing artery to build him another larger shunt. So, there will be a "shunt" and it will be larger, but it will not be synthetic...it will be made out of Cole's artery. I apologize for the confusion.

*GENERAL UPDATE*
Cole is eating like a small village. He eats 4 ounces of formula every 3-4 hours. To put that into perspective, Ava ate 2 ounces of formula every 4-5 hours. So, he eats as much in one sitting as Ava did in 8-10 hours.

For those of you who want an update in the sleep department...I think Laura covered that in her last post. Let me just say that "Senor Sleep" moved out to make room for Cole to move in. Actually, we should not complain because Cole does sleep for 3-4 hour time blocks on occasion and we have friends with 5 year olds that do not sleep more than 1-2 hours at a time. Still, when you are used to "8 to 8" Ava's sleeping habits, it is tough to adjust to anything less than that. Cole will get there too, in time....at least we hope he will...you hear us Lord? Let there be no mistake what the "desire of our hearts is."

Well, I gotta run to the dumpster to throw out the 416,372 dirty diapers that Cole has assembled. We shall talk soon!

MG