With that in mind, I was still not convinced that surgery was the right answer. We have a very active, joyful little girl and my thought was why fix something that isn't broken. So, I prayed over and over that God would grant us wisdom to make wise decisions for our daughter and that he would help us know what to do. I also prayed that we would be like-minded as we left our appointment today.
I am so thankful that God answered my prayers today. Dr. Hammel, the pediatric cardiothoracic surgeon in Omaha explained to us that Melia very clearly needs intervention and suggested that we pursue getting started sooner rather than later. He was confident, but not cocky. He was calm, honest about risks and hopeful that Melia is getting the interventions she needs at an early enough age that it will make a difference for her life.
Here are the facts...
...people with this heart condition usually die from it. They die from heart failure. Sometimes that is early in life and other times it is later (like 40, 50 or 60) but almost all (if not all) will suffer from heart failure.
...a corrective surgery is the current, best option for patients. It puts the workload of systemic pumping back on the left ventricle and therefore reduces the risk of right sided heart failure.
...at birth both ventricles have the same pressures, but shortly after birth the demands of the systemic pump create very different chambers. In Melia's case the right side is getting a thicker muscle and the left side is weaker. The early a corrective surgery is done the better chance that the left ventricle can actually take on the workload of being a systemic pump.
...in Melia's case her right side is already starting to fail. It is a very, very mild failure, but a failure nonetheless. Instead of pumping 2/3 of all the blood out with each pump it is only doing 1/2. And, because she had lived this way for almost two years, the left side of her heart is very weak.
...to prepare her heart for a corrective surgery, called a Double Switch, she will have to undergo two PA Banding procedures. The Banding of the Pulmonary Artery will make the left ventricle have to work harder and strengthen it so it is prepared to take over as the systemic pump after the Double Switch.
...The PA Banding surgery is not really a technically difficult surgery but Dr. Hammel does have three concerns: 1. If the band is too tight the left ventricle could acutely fail (this is a life threatening situation) 2. If the left ventricle decides not let itself be retrained it could fail down the road (teens or beyond, this would create a need for heart transplant) 3. Not getting the PA Bands done fast enough and the RV failing before we get to the Double Switch.
...although that is scary information Dr. Hammel feels very good about her current health and believes that if we do two bands over the course of 2-3 years that Melia's heart will respond well. If is does that a Double Switch surgery will be in her future in 3-5 years from now.
...Although it would have been better to have corrective surgery shortly after birth, the fact that she is only two is good. Teens and certainly adults do not respond as well to banding and the double switch.
So, with all this information we have decided it is in Melia's best interest to move forward with a PA Banding in about a month.
Believe me I DON'T WANT TO DO THIS, but right now I am not scared. God's faithfulness is steadfast and I wholeheartedly believe that He loves Melia more than I ever could. He placed her in this family, at this time because He knew it would be best for her. So, with confidence in God's love for us and her we willingly place our daughter's surgery, life and future into the loving hands of her Creator.
One of my friends encouraged me with words she received recently about her daughter. She was wisely told, "God created your child FOR HIM." So, whatever His plan is I have to submit. She is not mine, she is His daughter and I just get the privilege of loving on her and being her mommy for whatever time He gives me. I HOPE, HOPE, HOPE it is for a VERY LONG time, but His will, not mine be done.
So, with that information I would be so appreciative of your prayers for our family over the next few months. Here are some specific prayer requests:
~ a successful surgery in May with no complications. That she would not need a ventilator after surgery and that her left ventricle would not fail but respond to the banding well. That she would not die from this surgery.
~that Melia would not be afraid and that she would not have pain (aside from what is good for her to limit her activity).
~that her siblings would not be afraid and that this would strengthen their faith in God, their prayer life and their love for each other.
~for the surgeons, nurses and anesthesiologists skill. That their personal lives are peaceful and restful, so that they are not distracted or tired on the day of her surgery.
Thanks in advance for your prayers for Melia and our family!
