Daniel’s surgery was bumped to a day later this week. Apparently an “emergent case” took his spot, meaning another baby who is struggling needed to go first. Surgeons are doing rounds right now as I type, so hopefully I will find out when Daniel’s surgery is soon. Until then, I will take this time to unpack for you what exactly the Norwood procedure is.
Please refer to the picture below as I explain each step:
Daniel has Hypoplastic Left Heart Syndrome, meaning he has an underdeveloped left ventricle. The left ventricle is where the blood that has received oxygen in the lungs is pumped to the rest of the body. The fact that Daniel’s mitral valve is closed and his left ventricle is completely underdeveloped is a huge problem– blood can’t get to his body.
In order to get blood to the rest of Daniel’s body, doctors are giving him a continuous huge dose of PGE to keep his ductus arteriosus open. This is only a temporary solution, however. PGE is a necessary evil, and he can’t be on it forever.
For the the first step of the Norwood procedure, doctors sew together the “underdeveloped aorta” to the trunk of the PA. This then forms a new, big blood vessel that will get blood from the RV to the rest of the body.
Doctors will also widen the “opening between atria” so that the RA and LA form one big chamber.
Lastly, doctors will include a shunt from the top of the PA to the RV. This is how blood that needs oxygen will get to the lungs.
After the Norwood, his heart will then look something like this:
Look at the picture at the bottom right labelled “Norwood operation (Sano).”
As you can tell from my description and the pictures, this is a huge surgery. Surgeons are completely restructuring the heart of our infant son.
Our surgeons are amazing, and they have completed this procedure thousands of times over the course of a 30 year career. I am thankful for Dr. Dodge-Khatami and Dr. Salazar, and I completely trust their instincts, education, technical ability, and judgment.
But things happen all the time, and our precious boy was born premature.
When I thought the surgery was going to be Monday, I cried all day on Friday. I just keep thinking, “What if this is the last time I hold him?” and “What if this is the last time I see him like this? How will his life change after this procedure?” I have read many accounts of babies who have coded (heart stops) for several minutes, depriving their brains and bodies of oxygen, and in a few minutes their whole lives are completely transformed. Not to mention the constant threat that he will not make it through surgery, or that he will not be able to recover.
When I found out that his surgery was moved back a few days, I was really relieved, to be honest. But now I am dreading feeling all the emotions all over again. I know that I will be filled with dread as the day approaches, and I know there is no running from the feelings.
Something I have learned on this journey is it is impossible to predict what will happen. Even a hard a fast day on the schedule can be moved up or down depending on the need. Daniel could do something completely out of nowhere and need some other procedure I have never heard of. All of this is completely out of my hands, and I am helpless as I watch all of it unfold.
I am trying to remember that all of this is in God’s hands, and Daniel will get the care he needs based on God’s perfect timing. It gives me tremendous peace knowing that God is in control when I feel so completely helpless. This morning I read the words of Psalm 8: 1-4,
“When I look at your heavens, the work of your fingers,
the moon and the stars, which you have set in place,
what is man that you are mindful of him,
and the son of man that you care for him?”
As I sit in my seemingly never-ending bedside vigil, I have been copying down verses from the Psalms that reflect on the power and majesty of God. This is one of the sections I copied down because it reminds me that God formed the heavens and the earth, so he certainly is able to heal my son, whom he also knit together.
Another section I copied down the other day is from Psalm 125: 1-2–
`”Those who trust in the Lord are like Mount Zion,
which cannot be moved, but abides forever.
As the mountains surround Jerusalem,
so the Lord surrounds his people,
from this time forth and forevermore.”
Throughout all of this, I have been constantly reminded of God’s comforting presence. So many people have been praying for us at home and all over the country. Several doctors and nurses have prayed with us and have told us that they remember Daniel in their prayers each day. Multiple chaplains from the hospital have come in at just the right time to counsel me. Usually it is right when I am feeling weakest and most scared. They pray with me and then I am strengthened because usually I am too distraught to remember to pray by myself at that moment. We have received visitors from back home who have been a constant source of encouragement and a testimony to the love of Christ as they “with all humility and gentleness, with patience, bear with [us] in love” (Eph. 4:2). I have seen first hand the body of Christ at work, and I am so thankful for all of you who have shared in our journey.
I will keep you all updated as I find out what the tentative plan is for the week ahead. Please continue to pray for us, for Daniel, for his surgeons, and for the doctors and nurses who care for him.