Cardiologist update

I've kinda been dreading writing this, but I wanted to let everyone know what the cardiologist said when we brought Lucas last week.  What I thought was just a "run of the mill" heart murmur turns out to be something a little bit more of an issue. 

Where do I start?  Well, as I said before, when Lucas was in the NICU, they found a heart murmur.  An ASD.  Usually, ASDs have a very good chance of closing up with time, but Lucas has an ASD with an aneurysm.  An aneurysm is a flap over the hole.  The doctor told us that, the ASDs with an aneurysm do not usually close up.  Apparently, the hole is quite large (approx 8 mm) and the amount of blood going to the other side of his heart could enlarge it and cause problems over time.  The problem will have to be corrected between the ages of 2 and 4.

How can they fix it?  Well, there are two ways.  One is a catheter through the leg into the heart where a clam shell thingy is placed over the hole and closes it up.  This stops the blood from entering the other side of the heart.  For the size of the one Lucas has, there may not be enough tissue for this clam shell to clip on to.  If they do that surgery and the clam shell becomes dislodged, the outcome would be, in his words, catastrophic.  Therefore, this surgery is not an option.  Our last option is open heart surgery. 

The difference between the surgery happening at 2 as compared to at 4 is reliant on if the symptoms of the ASD are effecting him.  Weakness, extreme sleepiness, shortness of breath, poor weight gain....  Since his heart is working harder than a normal heart, it causes him to burn more calories and the most common problem they see is poor weight gain.  If Lucas doesn't have any of these symptoms come 4 years old and the hole has not closed up, they will still have to do the surgery.

This is a really hard thing for me to stomach.  I can't believe he is going to have to go through this.  I know it can be 10 times worse.  It really can be and I thank God everyday for my two healthy babies.  I am grateful it isn't worse, but that doesn't make it any easier.   Open heart surgery is such a scary thought. 

Until then, we are going to continue to pray.  Pray that he continues to grow healthy and strong and pray that the tiny "large" hole closes up.  Pray for all the families going through this right now with their little ones and the families and children with the bigger obstacles.  We also can't forget how fortunate we are and we must thank God everyday for the blessings he has sent to us.

Lucas Update again....

Hi everyone!  I am sorry it has taken me awhile to update, but we finally got to take our little man home on June 2nd and it has been quite chaotic around here!  Lily is adjusting to having a little brother and I am adjusting to having 2 kids.  We are both working very hard on it, but each day gets a little better!!!

Like I said, Lucas is home and is doing great!  The TTN just ran it's course and cleared up!  One day, we went in there and he was at such peace.  It was amazing.  He was a normal color (not bright red) and he wasn't working nearly as hard breathing.  He was still breathing fast, but that was slowly getting better as well.  They did a sleep apnea test before he left the hospital and it came back negative (thank goodness).  If it would have come back positive, he would have come home on oxygen and a monitor.  He still has a few issues while eating.  He coughs a lot, but it is getting better as well.  We have an appointment with the cardiologist on Friday.  I think that will go well.  Again, this murmur isn't something that would give us problems right now, but it is something that we need to keep an eye on.

Lucas made it back to his birth weight on Friday.  He was 9 lbs 2 ounces at the doctor's office.  I had to bring him to the doctor last Monday and he had yet to make it back to his birth weight.  Jennifer (ECI) came on Friday though, and did his stats.  According to her scale, he was 9.4 lbs and 22 1/4" long.  If you recall, his birth length was 20".  There is no way that he grew 2 1/4" in two weeks so we are thinking that the measurement they took in the delivery room was inaccurate.  I'm not surprised though.  They were concentrating on getting him breathing!

His sister on the other hand is still growing like a weed!  She was 31 lbs and 34 3/4".  She is going to be so tall! She is working very hard at adjusting to mommy's attention being divided.  She is doing all the things that the child life specialist at the NICU told us she might do while adjusting to having the new baby in the house... Not sleeping well, tantrums, anger.  She's working hard.  She loves her brother so much, but the entire process has been very confusing for her. 

Mommy's having a baby!  She's going to be in the hospital and come home with your baby brother. 

Oh wait, mommy is in the hospital but there's no baby and mommy comes home, but there is still no baby.   

Then one day he just shows up.  
Cue the confusion


Poor thing.  I really feel for her. 

Here is a picture of a tender moment between my two babies!

Thank you all so much for all your prayers and well wishes.  We have again been blessed with another little angel who gave us a run for our money at the get go, but is doing well.  We are very VERY blessed!