Cardiology Appt. #3 Update

Madison had her third follow-up Cardiology appointment at Children's yesterday. Everything is just great! She's chunking right up- 8 lbs. 15 oz. and she's 20 3/4 inches in height, 10th percentile now! If we were to take her gestational age (she'd only be 1 month old, since she was born at 35 weeks) she's in the 25th%, so she's doing just awesome. We couldn't be happier. On a cardiology note, her EKG was fine, her Echo looked good (although she was a wiggle worm) and from what they could see, her shunt looks wide and open. What a relief. Her SATS are beginning to drop though, they were 78 yesterday. Normally she hangs out around 80-82, so we could have just caught her at a low time too. She was taken off her Captopril medicine, which is an ace inhibitor and helps her heart function. I was a little nervous when hearing this, but Dr. Vernon said it's really unnecessary now with where her SAT levels are. So Maddie is only taking her 1/4 asprin daily (blood thinner) and no other meds! I know, it's amazing. Her doctor did want to order a blood test for her to see if she should be getting any supplements, like iron. So we'll be doing that in the next week, other than that, we don't go back for over a month! I hope I can make it to June 25th...it's very exciting that she doesn't need to be seen more often but also a bit scary. We were sad yesterday to say goodbye to our doctor...she's going on maternity leave until mid-Sept, so we'll be seeing a new doctor (Dr. Sesslar) now until she comes back. I'm so glad we have the SAT monitor here at home so if I'm unsure until then, I can check her. It's painless, just a little band that fits around her foot. The SAT level determines how much oxygen is in her blood, and because Maddie's has a lot of mixing of blue and red blood (oxygenated and unoxygenated) her SATS are lower. The number can tell us many things...like if her shunt could be narrowing or if she's having an SVT (arrhythmia, which she hasn't had any), if she's going into heart failure, etc. A normal person's SAT is 99-100. So, heart disease kids (like Maddie) never have a SAT level of 100 but after all 3 surgeries, they can be upper 90's which is great in comparison to 78 (like now). Her next surgery is also dependent on what her SATS are doing. When they are trending downwards and reach the 60's, it's time for the next surgery, along with how her heart looks, the pressures, etc. A cath procedure will be done before her next surgery to determine exactly what needs to be done and it is the most accurate way to tell heart function. They normally like to do the Bi-directional Glenn (her next surgery) around 4-6 months and when the child weighs close to 12 lbs. So, we're thinking that if everything keeps going the way it is, Maddie should have hers in August or September. The doctors also take into consideration getting her surgery done before flu and RSV season hits. Great timing for us! A friend of mine sent me a link to Dr. Cohen's (Chief Cardiothoracic Surgeon at Children's)grand rounds presentation on single ventricle heart defects (what Maddie has). It's an hour long and Maddie's condition, Pulmonary Atresia, is described at 8 minutes into it. Scroll down to the very bottom of our blog and click under Websites with information on Maddie's CHD on VIDEO: Single Ventricle Options to watch it. It's very interesting.

I feel incredibly grateful for Maddie's wonderful recovery...she's done exceptionally well and we couldn't have asked for more. If you would have asked me while I was pregnant what I was expecting with our heart baby, you would have gotten a different story...I never fathomed it could be this good. I had read so many stories of struggling, fragile babies and Maddie just doesn't fit this mold. We are so lucky and I thank God for my sweet baby and her little heart...He truly gave us one tough, determined little angel! We have been blessed beyond measure. So we continue to walk by faith and trust in His plan...and right now, I'm lovin' the plan!!! Thanks for your continued prayers as well...I know this has helped in the wonderful outcome we've had. Prayer really works! I truly believe in this. Keep them coming!!!