Ever hear the phrase, "Damned if you do, damned if you don't?" As Alicia's dad, I often feel like I'm caught in a constant stream of Catch-22s. I'll give you a couple of examples.
If you've been following, you'll remember the "hole" in Alicia's heart. OK, first of all, I need to clarify. There is no hole in Alicia's heart. =) I misheard/misinterpreted what the doctor said. The hole is actually a shunt. A what? A shunt. A shunt is a hole or small passage. So OK. It is a hole. (Aren't you glad that I'm not the one taking care of Alicia? I am! Haha.)
Anyway, all fetuses in utero have this shunt. It allows blood to pass between the two major arteries without needing to go through the fluid filled lungs. Once the fetus is born and becomes an infant, this shunt is supposed to close, allowing the blood to pass through the lungs so it can pick up oxygen. The problem with Alicia and many other preemies is that this shunt doesn't close. And therefore not enough blood passes through the lungs, resulting in her organs, muscles and other body parts not getting enough oxygen.
All right, so all of that to say that this shunt, which is called the ductus arteriosus, for those of you who wanted to know, is still open in Alicia. They had tried to use medicine to close the connection. But the medicine hasn't worked. So here's the first of our catch-22s. Doctors use the medicine to try to close the connection. However, the medicine has a side effect of causing bleeding in the stomach and the intestines. So what do you do? Do you allow the doctors to give the medicine knowing the potential side effect it might have? Without the medicine, she has this shunt that can cause potential heart problems. With the medicine there is the potential chance of internal bleeding. Damned if you do. Damned if you don't.
By the way, Linda spoke with the doctor this morning, and he's pretty convinced that the blood from Alicia's stomach and intestines was caused by the heart medicine. Wonderful. (In case you can't tell my tone of voice from the words on the screen, I'm being sarcastic.)
Next. Oxygen. Right now, Alicia can't breathe well enough on her own. Her lungs aren't strong enough. And her brain isn't developed enough to recognize that hello, we need to breathe. OK. So right now, the ventilator is keeping her alive helping her to breathe. Good. But extended use of ventilators and reliance on oxygen can cause lung damage. Bad. So, do we let her continue to use the ventilator knowing that without it she'd probably suffocate? Or pull her off the ventilator for fear of lung damage. Damned if you do. Damned if you don't.
I know I'm simplifying things a bit. And to be honest, of course, I'm going to give her the medicine and use the ventilator. I'm going to give my child as much of a fighting chance as possible. It's just that I feel like so often these past few days, I'm stuck deciding between the lesser of two evils.
Oh, and let's not forget the biggest catch-22 of all. The one that started all of this. Linda was having contractions that weren't stopping no matter what kind of anti-abortion drug we used. So delivery was emminent. But, do we let Alicia "stay in the oven" a bit longer, so that she has a bit more of a chance to develop or pull her out? If we wait and let her stay longer, there is the potential that Linda's water will break, collapsing the uterus and potentially increasing the risk of delivery. But if we pull her out, then her organs are underdeveloped and she runs the risk of not being able to survive outside the womb. Hmm... Damned if you do. Damned if you don't.
Thankfully, we trust in the great physician. Alicia is in his hands. And I'm constantly reminded about his grace. His abundant, abundant grace that covers circumstances like these. I mean, what can Linda and I do, right? We're not physicians. We don't have medical degrees. We don't have fancy machines that can allow us to peer into our little girls innards. We can only make decisions based on what the doctors tell us and just trust that the doctors know what they're doing.
But here is the beauty of grace. We are limited in what we can do as humans. Limited in what we can know, limited in our time, resources, and strength. We are limited. But what can stretch our resources and make them go farther than we can ever imagine? Grace. What can cover us and provide a safety net, in the case that we unwittingly make a bad decision? Grace.
Grace. Grace. Grace.
Several months ago, while trying to think of the perfect name for our precious girl, the thought came to me to give her a name connected with grace. In fact, not just her, but all of our children. Give them names that have a meaning of grace. Some of you know, that Alicia is actually our second child. About a year and a half ago, Linda had a miscarriage. Our first child was lost when Linda was eight-weeks pregnant. We named that child, Ian. The name Ian means "God is gracious." When thinking of Alicia, we felt that we also wanted grace to be a part of her name, and on the night that she was born, God confirmed it in a great way, so we gave her the name Charis.
Further confirmation came several days after Alicia's birth. We had asked my father to give Alicia a Chinese name. At the time, I had only told my father her first name, Alicia. I hadn't mentioned that we had also given her a middle name. My father on his own accord felt that he needed to include 恩 (en) the character for grace in her Chinese name. He thought of several combinations, eventually, he thought of the word, 臨 (lin) which means to arrive. The moment he thought of this name, “張恩臨" （Zhang En Lin) he teared up. He felt sure that this was the name that the Holy Spirit was giving to Alicia. "Grace has arrived in the Chang household."
So it seems that the Lord truly intends for our family to be one covered in grace. And the birth of Alicia ushers in a new era of grace for our family.
One of the biggest examples of grace that I've seen over this past week is what I like to call "The Seesaw." As you can imagine, this experience has been full of emotional ups and downs, highs and lows. But God has been amazing. First, he's been sustaining Linda and I through all of it, so that our lows are not very low, and we've been experiencing a lot of peace. Second, God has created somewhat of a seesaw for Linda and I. It's been an interesting phenomenon to observe. Somehow, Linda and I, when one of us is down emotionally, the other naturally is up and positive. And it's not one of those, "She's down, so I better force myself to be cheery." It's really a genuine sense of peace and positivity that God gives us as a way to encourage and strengthen each other. It reminds me of how in the bible it says, "Two are better than one . . . If either of them falls down, one can help the other up." Thank you, Lord, for my beautiful, wonderful "other."
Grace. Undeserved favor and blessing. It's so hard to live under grace. We are so often taught that we must work for and earn everything. We are also taught, "We reap what we sow." So we mess up, we deserve punishment. We do well, we get a reward. So we strive and strive, working ourselves to exhaustion, for fear of not being "good enough." But thank God for his grace. His grace that is ever deep and never runs dry. His grace that he lavishes out on us. His grace that covers a multitude of wrongs and failings. His grace. Charis.
Receiving grace is one of the hardest things to do, because it takes humility. It takes one needing to admit that we aren't perfect, we're weak, we're fallible. It takes one needing to say, "I give up. I can't do it on my own." Accepting the gift of grace means giving up any pretense of being perfect or having it all together. Something that's not very popular in our society today.
We are a family under grace. Alicia is alive today because of grace. Linda and I have peace and joy because of grace. We have all of you in our lives because of . . . all together now . . . GRACE!
So you know what, "Catch-22," we've got you beat! Grace trumps it all! And my Heavenly Father has a never-ending supply of it! Yahoo!
1. They've given Alicia all six shots of her shunt-closing medicine. (Shunt. That's kind of a fun word to say. Shunt.) But as of now, her shunt is still . . . well, a shunt. Please pray that God would perform a miracle and shut the shunt so that Alicia's heart can function normally, and that she would not need surgery.
2. As far as they can tell, the internal bleeding has stopped, but they've got to keep a close eye on her to make sure no more bleeding occurs. Pray that there would be NO MORE bleeding. And that Alicia's body would get rid of any of the old blood that may have collected inside.
3. Once the blood is completely out of her system, they hope to start feeding her some of Linda's milk. They were going to try to do this today, but because there was still some blood in her stool, they decided to wait one more day. Please pray that once Alicia starts taking the milk that her body would receive it, digest it well and thrive on it. The milk is full of important nutrients and antibodies that will get our girl to plump up and strengthen her body to finish the growing that she was needs to do before she can be out and about with us. The milk is also supposed to help to get her digestive system up and running. Kind of like a file that boots up a computer? (I may be mixing up my metaphors.) She'll be taking a few drops every few hours in the beginning and working her way up to higher and higher dosages. So pray that her body will respond well to the milk intake.
Now onto the warm-fuzzies. Can I just say again how much I appreciate every one of you that has been reading the blog, commenting, sending messages and just generally loving on us. You guys are such a blessing. And thank you for not only reading and praying, but asking your friends and communities to read and pray. I mean seriously, I believe there must be close to a thousand people out there covering us in prayer and walking with us through this journey.
I pray a blessing upon each of you.
BTW, speaking of which, please keep the comments and messages coming. We love hearing from you. Even if we can't respond to every one, each word of encouragement, each smile, each hello, each note of concern or story of victory blesses us and gives us fuel to keep walking the long road ahead.