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Matters of the Heart

Tomorrow is the big day. Daniel will be getting his Glenn. They will take him between 9:00 a.m. and 10 a.m. On his CT scan today, we got largely good news. His aorta is only mildly to moderately narrowed. Dr. Salazar thinks he can put in a stent, which is a less invasive option than patching it. He also doesn’t anticipate tightening the valve.

Since Daniel had his Norwood, he has been in the “interstage” period. “Interstage” refers to the period between the Norwood and the Glenn operation. It is an extremely risky time because the only way blood is getting to the lungs is through the white tube in the picture below (bottom right).  If there is a clot, a kink, or some malfunction with the conduit, bad things happen- things like stroke, cardiac arrest, imminent death. And there is largely nothing anyone can do about it if it happens.

Remember in a normal heart, blood that needs oxygen comes into the heart through the superior and inferior vena cava, and it is pumped into the lungs by the right ventricle. The blood receives oxygen in the lungs. Then the oxygenated blood returns to the heart through the pulmonary veins, where it is pumped to the rest of the body by the left ventricle.

Daniel only has his right ventricle because his left ventricle is very under-formed. Right now the right ventricle is having to do the work of both the right and left side. The oxygenated and unoxygenated blood is all mixing together. The right ventricle is pumping blood to the lungs and pumping blood to the whole body. Daniel’s right ventricle is having to work twice as hard as it was intended.

On Thursday, October 25th, Daniel came to Houston for a routine cardiology appointment with his single ventricle specialist. On the echo she performed in the office, Dr. Viddhya saw that his aorta was more narrowed than before, his right ventricle function was diminished, and his valve was leaking more than it was before. Basically, Daniel was in heart failure, and would require hospitalization until the Glenn.

Eventually, all of the blood that needs oxygen in Daniel’s body will go directly to his lungs, bypassing the heart altogether. This is a three-stage process. Stage 1 was the Norwood when the the aorta and the trunk of the pulmonary artery was fused together, and the atrial septum was completely removed. Basically the Norwood transformed Daniel’s heart into a semi-functioning two-chambered heart.

The next stage is the Glenn, which will be performed tomorrow. The Glenn redirects the blood from the upper body directly to the lungs. The superior vena cava (SVC) is the blood vessel that brings blood that needs oxygen from the upper body to the heart. During the Glenn, surgeons will attach the superior vena cava directly to the pulmonary artery. When surgeons only have to attach the SVC to the pulmonary artery, the Glenn operation is a much smaller surgery than the Norwood.

Once again Daniel is doing things on his own time. The Glenn is best completed between when the baby is between 4 and 6 months old. Daniel technically turns four months old on November 14th (next Tuesday), but he was six weeks early. Basically, Daniel is at higher risk for complications, not just because he is too young, but also because of the added risk and complexity of the other parts (the aorta stent and possible valve work). The good news is that on his pre-Glenn Cath procedure two weeks ago, his pressures are great, and doctors consider him “optimized” for surgery. He isn’t sick, as some babies are before surgery, so that is good news.  Hopefully we will be in and out of the hospital in a week or two.

After the Glenn, we will be able to treat Daniel like a “normal” baby. He will probably no longer need his feeding tube because he no longer has a paralyzed vocal cord, and he will have more energy. We will also be able to go out in public more. Most of our efforts to keep the kids sequestered is to keep Daniel healthy until he has the Glenn.

The anatomy of Daniel’s heart is always on my mind. Because I am always thinking of Daniel, I have been reflecting on matters of the heart as I am reading my Chronological Bible. What does it mean to feel close to God, and what does it mean if you don’t?

Today I read about Jesus’ triumphal entry into Jerusalem. Immediately before he entered Jerusalem, Jesus spent time painting an incredible portrait of God to His people through parables. In the parable of the lost sheep, Jesus describes a man who would “leave ninety-nine others in the wilderness and go to search for the one that is lost” and “joyfully carry it home on his shoulders” (Luke 15: 4-5) when found. In the parable of the lost coin, he describes a woman who would “light a lamp and sweep the entire house and search carefully until she finds it” (Luke 15:8-10). In both of these examples, we see the value God places on each of us. He seeks us out individually, and He rejoices when we are found. When some would just write off the one lost sheep or the one lost coin, Jesus portrays our God as one who would go to the ends of the earth for one lost soul.

A now-dear friend started following my journey with Daniel a month after he was born. When she read my blog posts, she messaged me and said, “I believe God has a non-linear view of time, so I am offering up prayers for Daniel, both for him now, during your pregnancy, and beyond.” I find this idea intriguing. As human beings, we have a beginning and an end. Time marches on in an unbroken line from the time we are conceived to the time we die. But God doesn’t have such limitations– he sees all things and all times, beginning and end and everything in between.

This hurts my brain a little bit to think about. I think she meant something along the lines of this– since God is the alpha and the omega, and since He created the universe and knows all, He knew she would offer up prayers for Daniel before she herself knew it, and He heard those prayers while I was still pregnant, even though she hadn’t said them yet. I’m not sure if this is a correct interpretation of God and His wisdom, but I do know that the book of Isaiah describes God’s omnipotence in chapter 46, verses 8-10:

“Remember this and stand firm, recall it to mind, you transgressors, remember the former things of old; for I am God, and there is no other; I am God, and there is none like me, declaring the end from the beginning and from ancient times things not yet done, saying, ‘My counsel shall stand, and I will accomplish all my purpose,'” (Isaiah 46:8-10)

I have had a harder time with Daniel being hospitalized this time. I think it may be because this was so unexpected. I was in denial at first. Once we got home and Daniel was doing so well, it was easy to think he was a normal baby. One routine appointment later, we are hospitalized and he’s in heart failure and I didn’t see it. I am so scared that Daniel is going to have complications recovering from the Glenn. Now Daniel needs me more than ever. I have been his primary caregiver for seven whole weeks, making all of the day to day decisions in his care.

When Daniel was a newborn, I loved him fiercely. We had a bond, even then. Now, it is a bond nurtured in time spent together. Before when Daniel cried, my heart hurt and I wished I could make him stop. Now, I know what each type of cry means. I know he has a wet or dirty diaper, when he has gas, when he just wants to snuggle based on his type of cry. I know that all I have to do is pick him up and let him nestle his face in my neck on the left side, and he will immediately stop. For some reason, it hurts worse to see him go through this pain this time since I know him so incredibly well, and I know I could take it away from him by holding him and comforting him.

Seeing my newborn recover from the Norwood was difficult, but there have been a whole new set of challenges having a three-month-old in the hospital. When Daniel was recovering from the Norwood, he was sedated and intubated for ten days. I was unable to comfort him and hold him most of the time, so I went back to the RV at night. This time, mom and I have been living in the hospital, both of us sleeping on this two foot wide bench in his PICU room. I feel so weak. I need my mom here with me. I can’t do this by myself up here. I feel like I am hanging on by a thread.

For some reason, I am finding it harder to be connected to God during this stay. I was so connected and close to Him during our previous hospitalization, but now I feel disconnected somehow. Maybe it is because I am not making time to read my bible because it has been a full time job keeping Daniel happy, eating, and getting sleep. Maybe it is because my mom is here with me and I find comfort in her presence. Maybe it is because this isn’t as “serious” of a surgery, and I am expecting Daniel to make it through with few problems. I have no idea, but I know I am missing my relationship with God, and I am worried that I don’t feel as close to Him.

When I think about the bit of wisdom my friend shared with me about God and his view of time, I am comforted in this: I don’t have to be strong NOW. In fact, I don’t have to be strong EVER. I worship the creator and master of the universe, the One who knit Daniel together in my womb. I can rest in His unfailing love and grace, and I can take comfort in the fact that I have an incredible Father who knows the whole me– past, present, and future. God knows how much I love Him. He knows my faith, which was established in baptism and grew by help of the Holy Spirit. When I am weak in the moment, I remember the words of 2 Corinthians 12:9, “‘My grace is sufficient for you, for my power is made perfect in weakness.’Therefore I will boast all the more gladly of my weaknesses, so that the power of Christ may rest upon me.”

I take comfort in the fact that “in your book were written, every one of them, the days that were formed for [Daniel],when as yet there was none of them” (Psalm 139:16). When I stress that Daniel will have complications in surgery, I am going to try to remember that God already knows the end of this story. Nothing can thwart God’s purpose. If God has ordained it, then it must be good. And that will always be enough for me, regardless of what happens.