Why? That's the big question I've been asking myself a lot today. Why? OK, not just today but quite often for the past few weeks.
Why? Why did Alicia have to come early? Why do we need to go through this? OK. Yes, I know the answers that I've given, "For His glory." "For His greater purpose." "For a greater blessing." But you know what, today, those answers don't satisfy me.
Couldn't there have been an easier way? Why us? Why this? Why? Why? Why? And you know the frustrating thing? Sometimes the answers don't come until later, if at all.
If you can't tell, my heart is pretty heavy right now as I write this. I wish I could always be positive and uplifting, but today, it's hard. Funny thing is a few days from now when this has passed, I'll probably be writing another entry and wondering what I was so freaked out about. But yeah, today is a challenging day.
A few days ago as I was writing and celebrating the faith and assurance that we had, I also wrote that I sensed there was a test of faith coming. Well, it's arrived.
We had a good visit with Alicia this morning, she was awake and had her eyes open for most of our time with her, which was sweet. I have no idea if she can see us, what she sees, but it was nice to see her conscious. However, we saw something in her eyes that kind of weighed heavily on our hearts. I mean, Linda and I aren't doctors and we are far from experts in reading non-verbal cues from our premie daughter, but there was something in her eyes today that is hard to describe. Her eyes were wide open and it could have been just my imagination, but she looked fearful or worried. Again, I'm no expert in premies and their expressions, but what the doctor told us during our visit could explain what we may have seen in Alicia's eyes.
The doctor came over about half way through our visit and we got to chatting with her. The great news is that Alicia continues to eat well. She's up to 6cc now and she's pooping pretty regularly, meaning that she's digesting well. She's even put on a bit of weight. Which is all great! We're proud of our little girl.
Then came the bombshell. We've known from the beginning that Alicia's has a PDA that hasn't been closing. Well today the doctor told us that they have been checking her heart every day and her heart has begun to swell slightly, which is an early sign of heart failure. Also, she hasn't been peeing as much, so fluid is collecting in her body, mostly in the heart and the lungs. Also, another symptom that the PDA is causing problems. They've given her some medicine to help her pee so that she can flush out some of the excess fluid. This way there is less of a burden on her heart and lungs. And the doctor says that they're going to observe her for a couple of days. If the conditions don't improve, they may need to do surgery soon.
The thought of our little girl going through surgery when she is so small is hard to bear. Linda and my hearts ache for our little girl and we really wonder what the Lord is doing.
Medically speaking, the PDAs of most 25-weekers don't close on their own without surgery. And when we asked the doctor today, she said that most likely Alicia's shunt won't close on its own, and since medicine hasn't helped, right now the only thing they can do is observe. Sometimes what happens is that even though the PDA stays open, it doesn't really affect the child and that his or her heart can still function well. But for Alicia this isn't the case.
Her heartrate has been higher than normal, and the swelling of her heart are indications that her heart is working extra hard to get blood to circulate through her body, which as I said earlier can lead to heart failure.
God, what are you doing? We know you can heal her. We know you have the power. And it's not like we haven't asked you for complete healing. And wouldn't a complete healing of her PDA that defies all medical explanation be something that would bring you glory? Do we need to really go all the way to the extremes to show your power?
Both Linda and I really wish we could just hug our little girl right now and tell her that it's all going to be all right and just assure her. But we can't even do that as parents. We're paralyzed and powerless. We can't comfort her, we can't help her. Sometimes, I'm just like I'm just "pretending" to be a father.
I mean, I see my daughter for half an hour twice a day. I hold her hand, I sing to her. But then what? I can't comfort her when she's in pain or when she's afraid. In fact, I feel like sometimes, my visits cause her stress. Then we always have to leave abruptly, because "visiting hours are up."
Even though we don't feel amazing right now, we still trust that our God is good. We trust that he's got a plan in place and we just speak life over Alicia. We speak health to her.
Even if the Lord takes her away, we say, "Blessed be your name."
But we believe that she's going to be fine and that she's going to come out of this stronger and better than ever.
Do I sound like I'm in conflict? Cause I am. =) haha.
1. Pray for Linda and I to continue to move forward in peace. For his assurance to reign in our hearts once again.
2. Pray for Alicia's heart and lungs. Pray that they would remain strong. Perhaps God is forming heart in a way that defies human reasonining. Perhaps he's allowing Alicia's heart work a bit harder right now so it will be extra strong in the future. Or maybe I have no idea what I'm talking about. =) But we trust that God has a purpose for all of this, even though right now in our human understanding it doesn't make any sense.
"Trust in the Lord with all your heart, and lean not on your own understanding. In all of your ways acknowledge him and he will make your paths straight."
OK. God. I give. I trust.
So back to what I was saying, Pray for Alicia's heart. Pray that God would perform a miracle and close that PDA and keep Alicia's heart from going into failure. And that he would improve her conditions soon. If her heart doesn't get better they may need to do surgery. Pray for God's wisdom in that. And if surgery is needed then pray that God would protect her. There is great risk for a child this small to have surgery, so we of course, are begging God to stave off surgery. PLEASE!
3. Pray for her lungs. She still continues to have a lot of mucus. They were able to clear it out completely that one time, but apparantly that doesn't mean it's not going to come back. So, every day they still need to clear her lungs of the mucus. Pray that her body would start to do that on it's own, and that God would strengthen her lungs and make them bigger and able to take in more air.
4. Pray for whatever and however the Lord leads you to pray. Honestly, as I'm writing all these things, I feel like I don't know if I'm really wording things correctly and I don't know if what I say are the problems are really the problems. But again, I'm reminded of CHARIS. GRACE.
Sorry, if this post is a bit all over the place friends. My mind is a little all over the place right now, and I'm kind of just writing from stream of consciousness.
We keep walking forward and we claim the victory! We will get through this and we will not just get through this alive, we will get through this and thrive!