Cardiologist appointment update

Height = 24.5 inches

Weight = 12 lbs. 15 oz.

Today our whole family proudly took Lilly to her first post-surgery cardiologist appointment. Dr. R, her cardiologist, ordered an echo done and was extremely pleased with the results.

Lilly's heart is functioning normally! How very very exciting to hear. :)

Her left and right ventricles are still thick, which happened in response to the holes she had in her heart. Perhaps now that the holes have been patched, and the pulmonary artery band removed, they will eventually become more normal. There is still a narrowing where the pulmonary artery band was. That should self-correct. But if not, then eventually Lilly will need a heart cath where they will insert a balloon and inflate it in that area.

Dr. R said to keep a check on Lilly with the pulse ox as he thinks she should be off the nighttime oxygen now. And once she has been off it for about a week, then we can stop giving her Lasix.

We knew things looked good when Dr. R said Lilly didn't need to come back for 4 months!

"A happy heart makes the face cheerful . . . ." - Proverbs 15:13a

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

Our heart surgery decision

Weight check = 11 lbs. 1 oz. !!!!!!!!!!

Yesterday Lilly went to the cardiologist for a heart checkup and echo. Dr. R said that Lilly's breathing and respiratory were the best he has ever seen for Lilly. Her heart function has returned to normal (after the virus last month) and her profusion good.

The echo also showed her left ventricle is BETTER! And one wall of her heart measured 1 mm less than last month. Because of this, Dr. R questioned whether Lilly has true hypertrophy or not.

It sounds like God is answering that prayer request, either through divine intervention, or perhaps through the new RBC Life product Lilly is on called Stem-Kine. I started her on the Stem-Kine at the end of May. (See my post "Super Supplements" dated May 28.) One of the benefits of Stem-Kine is supposed to be heart healing after about two weeks of taking the product. Wow!

We also had a long discussion with Dr. R about the pros and cons of the VSD repair surgery and of just staying with the pulmonary artery band for a longer time.

We have concluded that we want to again pursue the open heart surgery for Lilly at this time. Dr. R said that Lilly is "clinically fantastic" right now. In fact, he is going to contact Wolfson Children's Hospital in Florida again (where Lilly got her pulmonary artery band) and ask them to reconsider their decision not to do the heart repair. If they still refuse, then we will take Lilly to the surgeon in Charleston, SC (Medical University of South Carolina) that said he would be open to operating on her.

Due to Lilly's weight gain, Dr. R increased Lilly's Lasix to 0.5 mg (once a day) and the Enalapril to 0.5 mg (twice a day).

Before Lilly's cardiologist appointment, I had to go to the dentist. (I've got pesky problem with my right jaw popping apart.) The dental hygienist asked if I was going on vacation this summer. I said we'd like to but I don't feel too comfortable being away from hospitals with PICUs because we have a baby that has frequently been hospitalized. She replied that she knew just how I felt. She and her husband have a cat that was diagnosed with cancer in December and they don't want to leave it. It was really hard not to laugh. (I know how people can love a pet like a child so I don't mean to criticize.) But just to think of Lilly's roller coaster life and how I live on pins and needles at times, and how that compares to the life of a cat!

Lilly accomplished a milestone today. (Second two pictures.) She was having tummy time with a little pillow under her upper body. She was laying as usual with her head turned to the right. Then she suddenly lifted her head up and turned it to the middle and dropped it back down! She did this for several minutes turning it back and forth. It was incredibly exciting to see. She was exhausted after that and took an hour's nap. :)

"Seek the Lord and his strength; seek his presence continually!" - Psalm 105:4