12.19.09 - Growing stronger...

We had Liam's two appointments yesterday.  The cardiologist appointment went really well.  Liam's heart is doing great, his oxygen levels were at 85% (they like to see it anywhere from 70-85) and he now weighs in at 11 lbs. 15 oz.  He is growing right on schedule for where he needs to be.  Dr. Verma still thinks his next surgery will be when he is around 8 months old, which puts it in about May of next year.

After this next surgey, Liam will have to have a valve replacement surgery every 5 years or so until he is full grown, and then after that surgery whenever the valve wears out.  This will be a life long road for him, and us. Unfortunately, science has not developed a valve that grows with the body yet.  But, I have been researching online at the many discoveries and trials that are being done to help this issue. One of these advances is the use of a catheter method to replace the valve (article).

The swallow study did not go as I had hoped.  Liam is still aspirating at all thickness levels of formula.  This means he still cannot be fed anything by mouth yet.  We will not have anoher re-test for another 3 months.  At this point, we have to decide between keeping the NG tube he currently has or having a more permanent G tube surgically placed directly into his stomach.  There are risks and benefits to both methods, but I think the risk of the NG tube right now are greater than that of the G-tube surgery.  The OT told us that the risk of infection is greater keeping the NG tube he has now than it is with the surgery for the G tube placement.  This said, we have a big decision to make.  We still need to talk to our pediatrician and a surgeon to get answers to all our questions first, but I think Dustin and I are both leaning towards the surgery.

Both Dustin and I had our work Christmas parties this week.  I was able to take Liam to visit everyone at our offices yesterday after his appointments.  It was a nice follow up to what turned out to not be great news with his feeding issues.  It helped to keep my mind off things and just enjoy my wonderful little boy I love.  I know the Lord has purpose in every outcome of every test and appointment.  I am praying that I can focus on the bigger picture and know that God is using this for His glory...