Wednesday, September 16, 2015

American Heart Walk

This will be short and sweet, but we are signed up for the Topeka Heart Walk this Saturday! Please consider making a donation to the American Heart Association.

You may view Paige's site here:

Here is Jason's site:

Henry also is going to "participate". His site is here:
 http://heartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=1126713&lis=1&kntae1126713=5E09ED67394647BCAFEBF6EE990E0D03&supId=425278943

If the weather is decent, he may even be making an appearance out at the lake!

Tuesday, September 15, 2015

September is here!


Monday, we went up to Kansas City for a cardiology appointment. Henry had an EKG as well as his first echo in over two months. We are pleased to say that Henry is doing great! The regurgitation he had in his tricuspid valve is completely gone! We knew he might eventually grow enough that it could disappear, but we are elated it happened so soon. This probably explains why he seems to have so much energy! He also continues to put on weight, and is up over 18 pounds. He is now off of lasix, but will remain on the rest of his heart meds until his third surgery. 

The cardiologists are still keeping an eye on some narrowing in his Glenn (the area where the second heart surgery was done). There is also some scar tissue build up where they opened up the wall between the atria. They can tell plenty of blood is still passing through, so the goal is to take care of those areas during the third heart surgery.

We visited the Special Care clinic a couple of  weeks ago and they gave us the OK to offer Henry more of his bottles by mouth. We are now offering him five ounces four times a day, and he is typically taking half or more. We also give him two to three ounces at night to help him go to sleep. Eventually, we will add another feed and move the volume from his continuous night feed.


All in all, Henry is really doing great. We are half way into September, the time of year where we are both suffering from allergies. Henry, we are sorry that you have no way of getting out of that. He hasn't been too bad, but Zyrtec and staying indoors have helped control that. The doctors at Children's Mercy are thrilled that most of our struggles now - sleeping, crying, schedules, etc. - are just normal baby problems. It's still hard for us to not worry that his cries aren't something much more serious, but it gets a little easier each week.