Cardiologist update

Weight check 12 lbs. 6 oz. (no change here but that is normal for Lilly's age)

Yesterday Lilly had an appointment with Dr. R, her cardiologist. It was a good appointment. The echo showed no worsening in the heart.

Dr. R said that he had talked to Dr. E at Wolfson's Children's Hospital in Jacksonville, FL. (Lilly had a pulmonary artery band put on by the surgeon at this hospital last fall.) Earlier this spring that hospital made the decision not to do Lilly's needed VSD repair surgery (she has a large hole in her heart). However, because Lilly's heart has actually slightly improved since that decision, they have reconsidered and are open to doing the surgery. Dr. E said they want to do what's best for Lilly to have the longest life possible with us.

But first they want Lilly to have a heart catherization done. She will have to be put out under anesthesia and then Dr. R will make an incision in her upper thigh area and go in to her blood vessels with a catheter (about the size of a spaghetti noodle) and go up to the heart and measure pressures there. (I think I got that right!) It is usually an out patient procedure, but they may keep Lilly overnight just to be sure she's OK. We should be getting an appointment set up this week and the procedure will most likely happen in 2 weeks.

If everything goes well with the heart catherization, then Dr. E said they most likely will do the surgery on Lilly. He said that they are willing. Dr. R wants to see the surgery happen in the next 4-8 weeks. We all want Lilly to have it before the dangerous flu season begins.

Because Lilly is doing so well right now, and her breathing is good (other than the usual congestion in her head) Dr. R said let's stop giving Lilly her Lasix. We're just to listen closely for coughing, or a rattling or wet sound in her lungs. This is very good as I've been hearing from other mom's of Trisomy 18 children that Lasix is hard on the kidneys and can cause kidney stones. Dr. R agreed with this. T-18 kids tend to have kidney problems. Lilly will soon be having her kidneys scanned to check for any issues. This is supposed to be done yearly throughout her life.

As we left Lilly's appointment yesterday, I told my husband (for the zillionth time) I have learned way more medical stuff than I have ever had any desire too. My criminal justice background did not prepare me for this! We also talked about the amazing things modern medicine can do. Without it, Lilly would probably not be alive, unless God had performed a miracle in her after birth. (She just did not have the strength to eat enough.) And, we talked about how blessed we were that Lilly was born in this time period. It is amazing how many babies and young children died in past times, and that was sadly normal. (As a family we're reading the Susanna Wesley story (mother of the famous Christians John and Charles) and in her life Susanna had 19 children - 9 of which died young.) In this day and time, we just assume our children will live normal lives. And really that is very presumptuous of us.

"Why, you do not even know what will happen tomorrow. What is your life? You are a mist that appears for a little while and then vanishes." - James 4:14