Just when you think that you're in the clear along and everything is on the up and up along comes a wrench in the works to muddle things up. Just as you're ready to breathe a sigh of relief, along comes the stench of bad news to force you to hold your breath. Just when you think you can finally relax and take it easy, along comes a curve ball just to keep you on your toes.
Just in case, just in case we get to comfortable with the idea of Alicia being in the NICU, we got a few reminders today that Alicia is definitely not in the clear yet.
Lest we get too depressed, first some good news. =) Alicia's weight continues to improve. She's up to 1060 grams as of last night's weighing. This is great news. The bigger she gets, the stronger she is, the better she's able to breathe and do everything that she needs to do to live a healthy and normal life. She's also eating more and more, she's up to I believe 19cc per feeding now, so that's great. It means that she's digesting well and the food isn't a big burden on her body.
Now the troubling stuff. While she is growing each and every day, it seems that she isn't growing as quickly as the doctors would like. Today one of the doctors explained to Linda that they've begun to wonder where the calories Alicia takes in is going. I don't know all the details, but I guess based on the number of calories she's taking in, she should be growing more than she is. I guess the concern is that there is some other "problem" that is requiring Alicia to burn more calories than she should be burning. Alicia's calorie intake is already limited, so any amount she can take in hopefully goes to growing her. However, anytime her body needs to work harder at doing anything, the calories end up getting burned up doing those things. For example, if for some reason she's cold, her body needs to burn extra calories to keep her warm. If she's breathing harder for some reason, then that'll take up calories. All things that are normal for any human, but in her case, any extra calories burnt is not a good thing.
So the doctor recommended that Linda take in more calories in her food, to hopefully be able to add more calories to the milk that she's producing. Of course, Linda needs to take in healthy food, so it'll be an interesting challenge to find the right foods that are a good mix of high-calories but healthy.
Another issue is that Alicia has been on the ventilator for over two months now. And while we are so thankful for the ventilator that's been sustaining her life, it's also causing some damage to her body, namely her lungs and her eyes.
You'll remember previously I mentioned that Alicia has the lungs of an 80 or 90-year-old? Well, according to the doctors and nurses this diagnosis is still true. And the lung damage is making it hard for Alicia to be able to breathe well on her own. I mean with the vent settings as low as they are, she should be able to breathe on her own. But when they let her try to breathe on her own, her breathing gets pretty labored within a few minutes. So they feel they still need to keep her on the vent for a while longer. Problem is the longer she's on the vent, the more damage her lungs will sustain. So it becomes this vicious cycle.
Also, Alicia's eyes have started to show signs of more damage from the oxygen. I previously reported that Alicia's ROP (retinopathy of prematurity) was at a Level 1, which is the lowest level. Well, last week they discovered some more abnormal blood vessel growth in her eyes. Today, they did a followup appointment and while her ROP is still at level 1, they're concerned that it's progressing further rather than going away. And from my own reading, I know that this is a direct cause of the oxygen that she's using. They're even talking of potential laser surgery to correct the problem. The thought of my daughter going through another surgery is really not something I want to even entertain right now.
So MOST URGENT prayer request at this point, ask the LORD, no BEG him to get Alicia off the ventilator. While I'm thankful that the ventilator exists and that it's been able to sustain Alicia's life thus far, I really do not want it to be a part of her life anymore. I ask in JESUS NAME, Lord, that you would get her off this ventilator by this weekend. Please, please, please. Let Alicia breathe well on her own. Lord, YOU be her ventilator. You be the one to breathe the breath of life in her.
I was talking to Linda about this earlier, and I said, "I wish I knew what we could do to help her get stronger and to help her get off this ventilator." Linda responded by saying that she understood, but at this point all we can do is trust. We trust God that he knows what he's doing. Fretting and getting anxious about this situation is not going to help anything. So true. But so hard!
I mean, I don't get it. The vent is damaging Alicia, it's damaging your creation, why in the world would, you, God want to keep her on it. If any of you have any insight, please do share. =)
The temptation in a situation like this is to say, "God, what are you doing? Do you even care?" It can be easy to get offended, disappointed, and disillusioned with God. I mean, in my human understanding it's so clear what should be done, "GET HER OFF THE VENT!" So it seems a person can only conclude one of two things, "A) God doesn't have the power to heal her. or B) God has the power but doesn't want to heal her." I don't know about you, but both these prospects seem pretty depressing to me.
Honestly, I can't say that I know WHY God hasn't healed Alicia yet. It's a big no-no to compare her with other kids. But there is a boy who was born on the exact same night as Alicia about 30 min. before her. He is also the same age in terms of adjusted age. They were both born at 25 weeks. OK. Here's the thing though. The kid was about 100 or 200 grams bigger than she was. He had some sort of infection, but he never had the problem with the PDA that Alicia had. He's also now about 800 grams heavier than she is. He's also recently, I mean within the past couple of days, been extubated (his vent tube was removed) and switched over to another less invasive method of respiratory support. And now his parents can even start doing kangaroo care.
So comparing, it's hard to not be like, WHY HIM and NOT ALICIA? They're NOT Christians. They don't pray. What the heck? That's not fair.
Yet, here we are. Also, it's really, really hard for me to just trust the doctors. Are they really doing everything they can to get her off the ventilator? I mean this is just me talking out of my butt. Cause the doctors and nurses at our hospital really do work hard. But I can't help but wonder what goes on in that NICU when we're not around? We've got one nurse to two or three babies. So does that mean that Alicia doesn't get the attention she needs? I mean this is all in my head, I know. Because I know that the nurses and doctors do care a lot about Alicia. It's just hard not to wonder if Alicia is getting the care she needs, when sometimes during visiting hours we're sitting there, and we need something, and our nurse is off attending to some other kid across the room, or she's disappeared somewhere and we can't find her.
The frustrating this is that as much as all of this bothers me, what bothers me even more is that there is absolutely nothing that we can do. Correction, there is nothing in the physical realm that we can do. I can't sleep more. I can't read more. I can't eat more. Nothing I do will directly impact or improve Alicia's condition. Nothing, that is except pray.
So that's what I ask for you to do with us. Please pray!
1. ... that Alicia will get off the vent soon and that she can breathe well on her own without struggling.
2. ... that Alicia will use her calories efficiently so that her body can continue to grow nicely.
3. ... that her eyes and lungs would be restored to those of a newborn and be completely 100% healthy.
4. ... that Linda and I would continue to find the strength to trust God, especially when we don't understand.
5. ... that Alicia will have no lasting permanent damage, physically, emotionally, mentally, or spiritually from this time in the NICU.
6. ... that Alicia will be able to come home with us soon and very soon.
Thanks friends. Sorry that today was more of a downer post. We still have faith that Alicia is going to come home to us sooner rather than later. We are thankful that we were able to hold her last weekend and we believe for more and more of that. We believe that when she gets out of the hospital she's going to be healthy and strong.
It's just this time in between that can get a little tough sometimes. But we just continue to walk forward in faith.
Our God is an Awesome God. He is mighty in power. Nothing is too difficult for him!