This week has been quite a ride of ups and downs. We have received some wonderful news and seen miracles unfold, but have also been plagued by sleepless nights and heart-stopping moments of fear. Samuel often goes from sleeping peacefully, to rapidly losing oxygen, at the drop of a hat. It is so hard to leave his side, especially not knowing when these episodes might happen. In the moment it can feel like everything is hopeless, like we are losing him, like there is no way he will be able to recover...but then God reminds us that this story is so much bigger than ourselves. Our fears and doubts aren't orchestrating this story. God has bigger plans than we could ever imagine. He is answering our prayers, and working miracles!
Fear not, for I am with you; be not dismayed, for I am your God;I will strengthen you, I will help you,I will uphold you with my righteous right hand.Isaiah 41:10
Samuel had an echocardiogram the day he was born, where the doctors confirmed his diagnosis of Hypoplastic Left Heart Syndrome (HLHS). This diagnosis requires 3 risky surgeries over the first 3 years of life that completely restructure the heart, and depends on a strong set of lungs. The surgeons were not willing to do the first surgery for Samuel until he was 6-8 months old, due to his size and overall condition, when typically this surgery is performed in the first 3 weeks of life. We were also told that they wanted to wait for the genetic testing to come back before making any final decisions. Originally the results were supposed to be back within 3 weeks, but then that was changed to 8 weeks! Which was very discouraging to hear.
On Thursday they did another echocardiogram to see if Samuel's heart might be causing the drops in oxygen, but what they found was something completely different! The cardiologists came by Friday morning to say that there have been changes in Samuel's heart since last week!
THEY HAVE CHANGED SAMUEL'S HEART DIAGNOSIS!!!
GOD has performed a MIRACLE, and answered a specific prayer that many of y'all have been praying with us! Just since last week, the left side of Samuel's heart has increased in size! It is still a little smaller than normal, but it is large enough to function as a normal heart should! This means that Samuel does NOT have HLHS, and his heart will NOT have to be restructured into a single pumping chamber!
The only part of Samuel's heart that still looks too small is his aortic arch, which is why he has been on the heart medication since birth. This will still require a major surgery, but it will just be to enlarge the aorta, rather than completely restructuring the heart. This surgery will also be a more definitive fix, with a better possible outcome, if all goes well. Because Samuel still has 2 holes in the wall between the 2 lower chambers of his heart (Ventricular Septal Defect), this surgery will also involve putting a PA band around the pulmonary artery in order to control the blood flow.
With the change in diagnosis also comes a change in the timeline. Because this surgery will not depend so much on how strong Samuel's lungs are at the time, they will not need to wait for the genetic testing to come back, or wait near as long for his lungs to develop. Right now they want to perform the surgery around the time of his actual due date (April 6th) which is 4 weeks away.
For You formed my inward parts; You knitted me together in my mother's womb.
I praise You, for I am fearfully and wonderfully made.
Wonderful are Your works; my soul knows it very well.
My frame was not hidden from You, when I was being made in secret, intricately woven in the depths of the earth.
Your eyes saw my unformed substance;
In Your book were written, every one of them, the days that were formed for me, when as yet there was none of them.
We know that God controls the outcome. He brought Samuel into existence from nothing, and He can continue to heal Samuel's body. God knows exactly how many days Samuel has left on this earth, so worry and fear are useless. There is nothing hidden from God, and we know that He is working all of this together for our good and His glory!
Please continue to pray with us:
- For God to enlarge Samuel's aortic arch, and fill the holes between the lower chambers of his heart.
- For Samuel's lungs to continue expanding and getting stronger.
- For Samuel's oxygen levels to consistently stay in a good place, and for his agitation to decrease.
- For Seth and I as we are physically and emotionally weary from this journey. Pray that we can find rest, have endurance, and feel God's presence and peace.
- For the doctors to have wisdom regarding surgery, treatments, and timelines.
- For confounding the doctors by miraculously enlarging the left side of Samuel's heart!
- For the growth and development that has already taken place in Samuel's lungs!
- For His many provisions during our time away from home!
- For all of the wonderful doctors and nurses that have worked with us so far!
This is His story, and it is all for His glory!