I have to say, one of my favorite things to do is holding Alicia.
When I hold her, life becomes a whole lot simpler. It's not about deadlines, bills, mortgages, careers, health problems, etc... It's just about our family. Me, Linda and Alicia just being together.
Most of the time when we hold Alicia there is an initial few seconds when she deals with the shock of being pulled out of her incubator. But once we all get settled and everything calms down, Alicia just falls into this deep and peaceful sleep. These times when we get to hold her rarely does her oxygen levels drop, rarely does she cringe or get tense. She's just completely content just resting in Mommy or Daddy's arms.
I got back to the family on Thursday night after almost a full week of work. I rushed straight to the hospital from the High Speed Rail Station. Because I got held up at work, I was a little late getting to the hospital. And on my way to the hospital I was a bit anxious, but I felt God tell me not to worry, and that the nurses would give me grace to stay a bit longer. Well, not only did they let us stay a bit longer. They let us stay nearly an hour afterwards to hold and snuggle with our daughter.
In fact, over the past few days, the nurses have been really accommodating in this area. After each of our three sessions the past two days, one of the nurses has always asked us if we wanted to hold Alicia. And even though she's still a bit small for Kangaroo Care, they still let us hold her for quite a long time. I feel like the nurses are really rooting for our family and really rooting for us to be able to do Kangaroo as soon as possible.
For those of you who are a bit unclear about what Kangaroo Care is, it's a method for holding a baby involving skin to skin contact for an extended period of time. It's recommended for newborns, and especially premature kiddies, because it's been shown to have a large host of health benefits. Studies have shown that preemies who do Kangaroo Care tend to thrive and heal better and faster than those that don't.
At our hospital, their usual policy is to do Kangaroo Care only after the kid is breathing well on his/her own and off the ventilator. At that time, doctors feel that they are stable enough to handle the jostling and handling involved with taking them out of the incubator and placing them with the parents.
Thankfully, since Alicia's broke the 1000 grams mark, the nurses have been really sweet in giving us time to hold Alicia. It takes a small amount of effort to get her out of the incubator because the nurses need to disconnect the ventilator and wrap her in a towel, and then place her in our arms. And then she's got to make sure that the vent tube is adjusted in a position that doesn't pull at or dislodge the tube in Alicia's body. But thankfully, the nurses have been really sweet and proactive about asking us if we want to hold her.
While we still look forward to the day when we can do Kangaroo Care, we're thankful for this intermittent step. It's definitely a blessing, and privilege that we don't take lightly.
The other day one of the doctors saw us holding Alicia, and she said, "Well, since you've already taken her out, you might as well do Kangaroo Care." One of the nurses responded by saying, "We've been waiting for you to say those exact words." I guess all the nurses really hope for us to be able to do Kangaroo Care. Unfortunately the doctor isn't our attending physician, so she said, "Well, I can't make calls like that." Well, we pray.
I believe that once we can do Kangaroo Care, Alicia will improve by leaps and bounds.
She's been doing well in terms of her breathing. Yesterday, for the first time, I saw her breathe 21% oxygen (same as regular room air) and hold pretty steady. Today, she continued to do the same except when she was feeding. However, the amazing thing is previously when she was feeding, she'd need her vent to be set at 30% oxygen or higher. Today, she only needed about 25% oxygen. And then when we were about to leave, she had settled back down, so they were able to turn her back to 21% oxygen, and she breathed really well. So that's a vast improvement.
The one thing she still struggles with is breathing on her own. She's getting efficient at getting enough oxygen from lower oxygen saturation. But she's still not breathing enough on her own to pull her off the vent. The vent right now is still helping her take 15 breaths a minute. One reason for this is that her muscles may not be strong enough to maintain her breathing on her own yet. But that's OK. We keep praying and believing that she's going to get stronger and stronger and soon she will be breathing well on her own without help from the vent.
Alicia is also growing and getting bigger and bigger. After a week of not seeing her, I definitely saw a huge difference in size. That's a great praise. Trouble is doctors want her to grow more. And so do we. She grew 6 grams from yesterday to today. Ideally, she'd be growing 15-30 grams a day. Doctors are trying to figure out where her calories may be going. I think once they figure out this mystery and fix it, Alicia will take off. The bigger she is, the stronger she will be, and the more she'll be able to do things on her own. The more she can do things on her own, the sooner she can come home.
One thing that Linda and I are suspecting is that while she was born at 25 weeks, she may be more like a 24-weeker. We remember while Linda was still pregnant, that Alicia was measuring a little smaller than other kids of the same gestational age, which may explain why she was much smaller than other kids who were born at the same week as she. Keep in mind that gestational age is all estimated since no one really knows exactly when she was conceived.
Some good news is that Alicia's neighbor who was born on the same night as she was has graduated! He was also a 25-weeker, but weighed about 100 grams more than Alicia when he was born. In the beginning, he had some trouble with infection, but recovered from that quickly, and has been on the up and up since then. A couple of days ago, after pulling out his own tube accidentally, the doctors and nurses decided to see if he could breathe on his own, and he did really well! From there they went on to letting the mom do Kangaroo Care, and then today we got the news that he's strong and stable enough to move to the step down unit upstairs!
We're sad to see them go, but so happy that they're getting ready to go home! At the same time, our heart longs for our own day when we can go home. I hope that we will follow soon and very soon.
Also, please be praying for Alicia's other neighbor, Kai Ge. He's had some more complications these past few days and has been reintubated, meaning he's back on the vent. He also will probably need another round of surgeries over the next few days. He's already had several surgeries in his short lifetime, and originally he was doing really well and getting better and better. But somehow he got an infection and now he's back on the vent. We've been talking with his mom these past few days. And it's really hard on her and her husband. They've been in our NICU longer than any other current residents and they had hoped that they'd be going home soon. But with these new developments it looks like their stay may be prolonged a bit longer.
Thanks friends for all of your support and prayers.
Please pray for Linda and I. We're getting pretty tired of the battle. For the most part, we're still happy and content. But we are ready for all of this to be over and for life to get back to normal. Well, as normal as life can be with a newborn. =)
I feel all over the place right now. I'm not really sad or depressed, but at the same time I am very weary. I just want everything to be simple. It just feels like everything takes effort nowadays. I don't know if that makes any sense. Our spirits are good, we still laugh and smile and enjoy each other's company, but at the same time we wouldn't mind if God would create and instant miracle and heal Alicia right now.
I'm not really making sense. My mind is pretty tired. I feel like I need a vacation. Haha.
Anyway, thanks everyone.
Lots of love.
Saturday, August 6, 2011
Wednesday, August 3, 2011
Entitlement
After writing the previous post last night, I really wrestled with God for awhile.
Why aren't you helping Alicia? Why aren't you helping her get better? You know what the vent is doing to her body, this can't be a part of your plan can it?
As I struggled I felt the Holy Spirit speak to me.
He said, "Do you trust me?"
Yes, Lord, but . . .!
"I'm taking care of her. Leave her to me. And no she will no matter the outlook now, you must trust that Alicia will not have permanent lung damage or eye damage. I will bring her out of this, you must look beyond your circumstance."
In resignation, I gave up and just said, "OK. I give. I trust."
Yet within my heart, I still felt a seed of resentment, that is until God pointed something out to me.
Why do I feel that I have any right to demand anything from God? Yes, I am his child. Yes, because of my faith in Jesus Christ, I have been adopted into the family of God, and with that, I have rights and privileges. I have access to the Heavenly Father. I can talk to him, I can ask him for things.
However, being a child of God does not give me the right to be a spoiled brat. In essence, I was starting to throw a tantrum last night.
"I want it! I want it now!! Give it to me! Give it to me!
Any parent of a child 2 years old or older will tell you what this experience is like.
So yes, I can ask, and I can plead, and I can talk to my Father about my need. But what I don't have the right to do is to get angry or offended when he doesn't do things MY way.
Truth is God owes me nothing. NOTHING. In fact, I'm the one who owes him my very life. He created me. Physically, I wouldn't be here if it were not for him. Spiritually, my life would be a mess if he hadn't pulled me out of the mess that I had created for myself. (That's another story for another time.)
Basically, my point is that throughout my lifetime, God has already given me far more than I deserve in terms of his grace and way more than I deserve in terms of the discipline and punishment for the bad choices I've made. He's already done his share. And in fact if we were living under the law of quid pro quo, and he stopped doing anything more for me from this day forward, I would still owe him more than I could ever pay back.
Thankfully, we don't live under the law of quid pro quo, but under grace, and God is abundantly generous, so I can continue to seek him and ask him when I have needs.
However, what God reminded me last night is that I don't have the right to throw a fit because things aren't working out the way I would like them to. I'm not entitled to anything. Everything he does is extra. It's a blessing.
The fact that Alicia is alive today and not dead. That's already a miracle and a gift already. The fact that I live in a country where insurance will cover most of Alicia's hospital stay, again another huge blessing and miracle. The fact that we have a free place to live while we wait for Alicia's discharge from the hospital, another gift. I mean there are more blessings than I can count.
Yet I still act as if God hasn't done anything, and I act as if he's a cruel, uncaring God who dares to deny me my request.
Who am I?
In Psalm 8 it says
3 When I consider your heavens,
the work of your fingers,
the moon and the stars,
which you have set in place,
4 what is mankind that you are mindful of them,
human beings that you care for them?
It's so true. Who are we that God would be mindful of us, and cares for us? And yet he does. He loves us and he's mindful of us. He knows when we stand and when we sit. He knows every word before it comes out of our mouths. He knows every hair on our head. He knows.
And you know what, I've said this before, He loves Alicia more than we could ever love her. He has got an amazing plan for her future and he knows just what she needs in order to fulfill that plan. So he's got it, he's taking care of her. Maybe not on my timeline, but he's doing it.
And the amazing thing is that God humbles himself to partner with us. He humbles himself to hear our requests, to allow us to talk to him, and ask him for things. Actually, he not only allows it, he desires it. He wants us to talk to him.
And yet we take that privilege and try to turn it into a right. We go from asking to demanding. OK, wait, no change the pronoun. I... I take that privilege and try to turn it into a right. I go from asking to demanding.
So I'm sorry, Lord. You don't owe me or my family a thing. You've already done way more than we could ever ask for or imagine. The amazing this is that you will continue to do so, for that is your nature and you would never do anything to go against your nature. I'm sorry that I ever doubted your goodness and your faithfulness. I'm sorry that I threw a tantrum because I felt that you were being cruel or coldhearted. You are more loving, and more gracious than anyone I know. Even in this, you are not angry, you only gave a gentle reminder. And truth is, you know how I feel. When Jesus was on the cross, you didn't save him. Though it hurt you to see him suffer, you allowed him to die for us. You knew there was a greater purpose. So we trust in your plan. I trust that it is not your desire for Alicia to have permanent lung damage or eye damage. I trust that no matter the prognosis, you are the ultimate physician and have the perfect timing for everything. Father, I just lift up Alicia into your hands. I ask that you would watch over her and guide the doctors and nurses in their care of Alicia. I ask that you would give them wisdom. Where there are problems, I pray that you would give them insight to catch it quickly. Where there are triumphs, I pray that you would encourage them and help them to know that they're doing a great job. Lord, specifically we ask that you would get Alicia off this ventilator as soon as you think is best. I pray that you would heal the damage that has been done in her body through the use of the excess oxygen. I ask Lord, that you would restore her body to be better than that of any regular newborn. Thank you, Father. I give over my life, and the life of my family into your hands.
In Jesus Name
Amen
Why aren't you helping Alicia? Why aren't you helping her get better? You know what the vent is doing to her body, this can't be a part of your plan can it?
As I struggled I felt the Holy Spirit speak to me.
He said, "Do you trust me?"
Yes, Lord, but . . .!
"I'm taking care of her. Leave her to me. And no she will no matter the outlook now, you must trust that Alicia will not have permanent lung damage or eye damage. I will bring her out of this, you must look beyond your circumstance."
In resignation, I gave up and just said, "OK. I give. I trust."
Yet within my heart, I still felt a seed of resentment, that is until God pointed something out to me.
Why do I feel that I have any right to demand anything from God? Yes, I am his child. Yes, because of my faith in Jesus Christ, I have been adopted into the family of God, and with that, I have rights and privileges. I have access to the Heavenly Father. I can talk to him, I can ask him for things.
However, being a child of God does not give me the right to be a spoiled brat. In essence, I was starting to throw a tantrum last night.
"I want it! I want it now!! Give it to me! Give it to me!
Any parent of a child 2 years old or older will tell you what this experience is like.
So yes, I can ask, and I can plead, and I can talk to my Father about my need. But what I don't have the right to do is to get angry or offended when he doesn't do things MY way.
Truth is God owes me nothing. NOTHING. In fact, I'm the one who owes him my very life. He created me. Physically, I wouldn't be here if it were not for him. Spiritually, my life would be a mess if he hadn't pulled me out of the mess that I had created for myself. (That's another story for another time.)
Basically, my point is that throughout my lifetime, God has already given me far more than I deserve in terms of his grace and way more than I deserve in terms of the discipline and punishment for the bad choices I've made. He's already done his share. And in fact if we were living under the law of quid pro quo, and he stopped doing anything more for me from this day forward, I would still owe him more than I could ever pay back.
Thankfully, we don't live under the law of quid pro quo, but under grace, and God is abundantly generous, so I can continue to seek him and ask him when I have needs.
However, what God reminded me last night is that I don't have the right to throw a fit because things aren't working out the way I would like them to. I'm not entitled to anything. Everything he does is extra. It's a blessing.
The fact that Alicia is alive today and not dead. That's already a miracle and a gift already. The fact that I live in a country where insurance will cover most of Alicia's hospital stay, again another huge blessing and miracle. The fact that we have a free place to live while we wait for Alicia's discharge from the hospital, another gift. I mean there are more blessings than I can count.
Yet I still act as if God hasn't done anything, and I act as if he's a cruel, uncaring God who dares to deny me my request.
Who am I?
In Psalm 8 it says
3 When I consider your heavens,
the work of your fingers,
the moon and the stars,
which you have set in place,
4 what is mankind that you are mindful of them,
human beings that you care for them?
It's so true. Who are we that God would be mindful of us, and cares for us? And yet he does. He loves us and he's mindful of us. He knows when we stand and when we sit. He knows every word before it comes out of our mouths. He knows every hair on our head. He knows.
And you know what, I've said this before, He loves Alicia more than we could ever love her. He has got an amazing plan for her future and he knows just what she needs in order to fulfill that plan. So he's got it, he's taking care of her. Maybe not on my timeline, but he's doing it.
And the amazing thing is that God humbles himself to partner with us. He humbles himself to hear our requests, to allow us to talk to him, and ask him for things. Actually, he not only allows it, he desires it. He wants us to talk to him.
And yet we take that privilege and try to turn it into a right. We go from asking to demanding. OK, wait, no change the pronoun. I... I take that privilege and try to turn it into a right. I go from asking to demanding.
So I'm sorry, Lord. You don't owe me or my family a thing. You've already done way more than we could ever ask for or imagine. The amazing this is that you will continue to do so, for that is your nature and you would never do anything to go against your nature. I'm sorry that I ever doubted your goodness and your faithfulness. I'm sorry that I threw a tantrum because I felt that you were being cruel or coldhearted. You are more loving, and more gracious than anyone I know. Even in this, you are not angry, you only gave a gentle reminder. And truth is, you know how I feel. When Jesus was on the cross, you didn't save him. Though it hurt you to see him suffer, you allowed him to die for us. You knew there was a greater purpose. So we trust in your plan. I trust that it is not your desire for Alicia to have permanent lung damage or eye damage. I trust that no matter the prognosis, you are the ultimate physician and have the perfect timing for everything. Father, I just lift up Alicia into your hands. I ask that you would watch over her and guide the doctors and nurses in their care of Alicia. I ask that you would give them wisdom. Where there are problems, I pray that you would give them insight to catch it quickly. Where there are triumphs, I pray that you would encourage them and help them to know that they're doing a great job. Lord, specifically we ask that you would get Alicia off this ventilator as soon as you think is best. I pray that you would heal the damage that has been done in her body through the use of the excess oxygen. I ask Lord, that you would restore her body to be better than that of any regular newborn. Thank you, Father. I give over my life, and the life of my family into your hands.
In Jesus Name
Amen
Tuesday, August 2, 2011
Just When You Think . . .
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!
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!
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!
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!
Saturday, July 30, 2011
At Last
At last, at last, at last!
At last, I got to hold my baby girl in my arms. At last, I got to feel her tiny weight nestled against my chest. At last, I had to chance to look at my daughter and to have her see me without a plate of plastic obstructing our view. At last.
Was it everything I imagined it would be? It was more. Definitely, more.
Our visit this evening started off like any other. We went in, washed our hands, put on our scrubs, then took our place besides Alicia's incubator. She was sleeping as usual. We greeted her quietly without wanting to wake her up, and then for the next half hour, proceeded to take turns holding our little girl with the palm of our hands. As we sat there, Linda commented on how things were a lot quieter tonight than in the morning. And told me, "Maybe you'll get to hold Alicia tonight." I just kind of brushed her comment aside, not wanting to get my hopes up.
About 20 minutes into the visit, one of our favorite nurses came over for a chat. We got to talking about how well Alicia was growing and Linda shared with her that she got to hold Alicia yesterday morning. Knowing Linda, she wasn't sharing with the nurse just for the sake of sharing with the nurse. Linda has an amazing ability to suggest things to people without actually coming right out and saying what she means. And somehow, people always understand her. So upon hearing that Linda had held Alicia the day before, the nurse got really excited. She was really happy for Linda and said that actually Alicia is doing a lot better, and she's really stable, which is why Linda was able to hold her. Then she said the magic words that I'd been waiting all day yesterday and today to hear. She asked, "Daddy, would you like to try holding her?" I didn't dare believe it. The moment I'd been waiting for. "Really?" I asked, "Could I?" "Sure! After visiting hours just wait a while, and we can let you hold her." My heart lept. Could it be true? Was I finally going to hold my little girl?
The nurse stood by us and talked to us a bit longer. She even said that from her observation of Alicia, she's stable enough to do Kangaroo Care. And actually she and the other nurses really want us to be able to do it as soon as possible because they know what a difference it can make for the kid. But, she said, it depended on whether we were OK with it, and of course, whether the doctors felt Alicia was stable enough. Of course, Linda and I told her emphatically that we were OK! And we were ready, whenever the doctors felt that Alicia could do it.
I stood there listening to Linda and the nurses conversation, but I could barely concentrate for anticipation of what was to come. Usually, I feel that visiting hours end too soon, but tonight, I couldn't wait for them to be over. The sooner everyone left, the sooner I could have my baby in my arms.
Finally, we heard the announcement that we usually dread. "Dear Family Members, visiting hours are over, please come back tomorrow to see your children." Suddenly from across the room, these pink partitions started floating over in our direction. I was confused. These are the partitions they use to give parents privacy as they're doing Kangaroo Care. I didn't think we were doing Kangaroo Care, so I thought maybe the screens were for someone else.
But suddenly, the partitions stopped beside us, and the next thing I knew we were being enveloped in a curtain of pink. Were we doing Kangaroo Care? Linda, I guess, had the same thought, because as the nurse went over to the incubator to get Alicia, she asked, "Are we doing Kangaroo Care?" The nurse kind of smiled and said, "Oh, no. Not yet. Besides to do Kangaroo Care, you'd need to take a shower first." OK. Slight disappointment. But who cares! I was going to hold my daughter.
One of the other nurses pulled a stool over, and Linda told me to sit on it. The nurse opened the incubator and there was our precious girl. One of the other nurses poked her head around the partition and asked what was going on. The nurse handling Alicia told her that she was taking her out so that we could hold her. Then one after another the other nurses started coming over wondering what was going on. One by one the nurses were told that "Daddy is going to get to hold Alicia." All the nurses started to get excited. Eventually, one of the nurses was like, "Why do you have these partitions up? We want to see too." So the partitions were removed, as the nurse picked Alicia up, wrapped her in a towel, detached her ventilator, pulled her out and placed her in my arms.
My arms accepted my daughter like they were created for the sole purpose of holding her. She fit into my arms so perfectly. I had the biggest, goofiest grin on my face and I could feel my eyes watering. At last. My daughter. At last.
Alicia did so well in my arms. She didn't cry or give any sign of being uncomfortable. She did flinch a little at the light, but she was so content in my arms, and I was so content just holding her. I could have sat there for hours.
We took picture after picture of the momentus moment. Family shots, close ups of Alicia, Daddy and daughter, then a big group shot with all the nurses. We were quite the site. Good thing no one else was around, except Kai Ge's mom behind us. She was happy for us too. The doctor came over at one point just to check and see if Alicia was OK. And she was, so he left us alone.
Too soon, it was over. The nurse asked Linda if she would like to hold Alicia, because we needed to put her back in to rest. I handed Alicia over to Linda and let her hold her for a few minutes. Then it was back into her plastic royal chambers.
The nurses kept joking that Alicia was going to get addicted to being held. I think Linda and I are already addicted to holding her.
Linda and I compared notes about how we felt the first moment Alicia was placed in our arms. And the feeling that we both had was that it felt right. It felt like she belonged in our arms. She is ours.
There is nothing like, holding your daughter and having her look at you with her big doe eyes. Granted, she did look a bit confused, kind of like, "Uh, Why you all up in my face?" haha. But she did settle down and just kind of looked around like, "I like this. This is cool."
It's strange to think that it took 2 months for us to be able to hold our daughter. Before yesterday, I hadn't given any thought to how odd it is that we hadn't held her yet. But after hearing about Linda holding her, and now having held her myself, I can't believe we went that long.
Great news is that us being able to hold Alicia means she's on the up and up! 1026 grams today. Who knows how much more she'll be tomorrow! Keep growing baby girl! Mommy and Daddy are so proud of you and we can't wait to bring you home when we can hold you and love on you whenever we want. =)
---
Update: Linda just read the blog and informed me that when she shared with the nurse about getting to hold Alicia, her sole purpose was only to share the great news with her, since that nurse has been so sweet to us. She was not trying to hint at the nurse in anyway. So the whole thing was all God. Thank you, Daddy, for the amazing opportunity to hold our little girl. Thank you for opening the doors and placing it on the nurses heart to give me the chance to hold her. Thank you for loving us and blessing us with so many little gifts each and every day. I'm sorry, that sometimes we forget to acknowledge your goodness, for truly every good and perfect gifts comes from you.
At last, I got to hold my baby girl in my arms. At last, I got to feel her tiny weight nestled against my chest. At last, I had to chance to look at my daughter and to have her see me without a plate of plastic obstructing our view. At last.
Was it everything I imagined it would be? It was more. Definitely, more.
Our visit this evening started off like any other. We went in, washed our hands, put on our scrubs, then took our place besides Alicia's incubator. She was sleeping as usual. We greeted her quietly without wanting to wake her up, and then for the next half hour, proceeded to take turns holding our little girl with the palm of our hands. As we sat there, Linda commented on how things were a lot quieter tonight than in the morning. And told me, "Maybe you'll get to hold Alicia tonight." I just kind of brushed her comment aside, not wanting to get my hopes up.
About 20 minutes into the visit, one of our favorite nurses came over for a chat. We got to talking about how well Alicia was growing and Linda shared with her that she got to hold Alicia yesterday morning. Knowing Linda, she wasn't sharing with the nurse just for the sake of sharing with the nurse. Linda has an amazing ability to suggest things to people without actually coming right out and saying what she means. And somehow, people always understand her. So upon hearing that Linda had held Alicia the day before, the nurse got really excited. She was really happy for Linda and said that actually Alicia is doing a lot better, and she's really stable, which is why Linda was able to hold her. Then she said the magic words that I'd been waiting all day yesterday and today to hear. She asked, "Daddy, would you like to try holding her?" I didn't dare believe it. The moment I'd been waiting for. "Really?" I asked, "Could I?" "Sure! After visiting hours just wait a while, and we can let you hold her." My heart lept. Could it be true? Was I finally going to hold my little girl?
The nurse stood by us and talked to us a bit longer. She even said that from her observation of Alicia, she's stable enough to do Kangaroo Care. And actually she and the other nurses really want us to be able to do it as soon as possible because they know what a difference it can make for the kid. But, she said, it depended on whether we were OK with it, and of course, whether the doctors felt Alicia was stable enough. Of course, Linda and I told her emphatically that we were OK! And we were ready, whenever the doctors felt that Alicia could do it.
I stood there listening to Linda and the nurses conversation, but I could barely concentrate for anticipation of what was to come. Usually, I feel that visiting hours end too soon, but tonight, I couldn't wait for them to be over. The sooner everyone left, the sooner I could have my baby in my arms.
Finally, we heard the announcement that we usually dread. "Dear Family Members, visiting hours are over, please come back tomorrow to see your children." Suddenly from across the room, these pink partitions started floating over in our direction. I was confused. These are the partitions they use to give parents privacy as they're doing Kangaroo Care. I didn't think we were doing Kangaroo Care, so I thought maybe the screens were for someone else.
But suddenly, the partitions stopped beside us, and the next thing I knew we were being enveloped in a curtain of pink. Were we doing Kangaroo Care? Linda, I guess, had the same thought, because as the nurse went over to the incubator to get Alicia, she asked, "Are we doing Kangaroo Care?" The nurse kind of smiled and said, "Oh, no. Not yet. Besides to do Kangaroo Care, you'd need to take a shower first." OK. Slight disappointment. But who cares! I was going to hold my daughter.
One of the other nurses pulled a stool over, and Linda told me to sit on it. The nurse opened the incubator and there was our precious girl. One of the other nurses poked her head around the partition and asked what was going on. The nurse handling Alicia told her that she was taking her out so that we could hold her. Then one after another the other nurses started coming over wondering what was going on. One by one the nurses were told that "Daddy is going to get to hold Alicia." All the nurses started to get excited. Eventually, one of the nurses was like, "Why do you have these partitions up? We want to see too." So the partitions were removed, as the nurse picked Alicia up, wrapped her in a towel, detached her ventilator, pulled her out and placed her in my arms.
My arms accepted my daughter like they were created for the sole purpose of holding her. She fit into my arms so perfectly. I had the biggest, goofiest grin on my face and I could feel my eyes watering. At last. My daughter. At last.
Alicia did so well in my arms. She didn't cry or give any sign of being uncomfortable. She did flinch a little at the light, but she was so content in my arms, and I was so content just holding her. I could have sat there for hours.
We took picture after picture of the momentus moment. Family shots, close ups of Alicia, Daddy and daughter, then a big group shot with all the nurses. We were quite the site. Good thing no one else was around, except Kai Ge's mom behind us. She was happy for us too. The doctor came over at one point just to check and see if Alicia was OK. And she was, so he left us alone.
Too soon, it was over. The nurse asked Linda if she would like to hold Alicia, because we needed to put her back in to rest. I handed Alicia over to Linda and let her hold her for a few minutes. Then it was back into her plastic royal chambers.
The nurses kept joking that Alicia was going to get addicted to being held. I think Linda and I are already addicted to holding her.
Linda and I compared notes about how we felt the first moment Alicia was placed in our arms. And the feeling that we both had was that it felt right. It felt like she belonged in our arms. She is ours.
There is nothing like, holding your daughter and having her look at you with her big doe eyes. Granted, she did look a bit confused, kind of like, "Uh, Why you all up in my face?" haha. But she did settle down and just kind of looked around like, "I like this. This is cool."
It's strange to think that it took 2 months for us to be able to hold our daughter. Before yesterday, I hadn't given any thought to how odd it is that we hadn't held her yet. But after hearing about Linda holding her, and now having held her myself, I can't believe we went that long.
Great news is that us being able to hold Alicia means she's on the up and up! 1026 grams today. Who knows how much more she'll be tomorrow! Keep growing baby girl! Mommy and Daddy are so proud of you and we can't wait to bring you home when we can hold you and love on you whenever we want. =)
---
Update: Linda just read the blog and informed me that when she shared with the nurse about getting to hold Alicia, her sole purpose was only to share the great news with her, since that nurse has been so sweet to us. She was not trying to hint at the nurse in anyway. So the whole thing was all God. Thank you, Daddy, for the amazing opportunity to hold our little girl. Thank you for opening the doors and placing it on the nurses heart to give me the chance to hold her. Thank you for loving us and blessing us with so many little gifts each and every day. I'm sorry, that sometimes we forget to acknowledge your goodness, for truly every good and perfect gifts comes from you.
Family Reunion
It's been a week since I left Linda and Alicia and went back to work. Starting work again has been a mixed blessing. It's been good to get back to a normal schedule and to be doing something productive again. It's also been nice to be back in my own house, in my own bed. However, it is hard being away from the girls. Not getting to see them every day is no fun. But I trust that they are in God's hands and it's really fun to come back and to see how much Alicia has grown in just one week.
They started visiting hours early last night, so by the time we got to the NICU, the doors were already open, so after washing our hands and putting on our smocks, we just went right in. Alicia was in her usual spot and she was resting peacefully. The other mothers whom we've become friends with now, greeted me and welcomed me back warmly as I stepped closer to get a better look at my little girl. She looked good, definitely bigger than the last time I saw her. I spoke to her, opened the incubator and put my hand through and laid it over her. As I did, she stirred a bit and opened her eyes. I started to talk to her again, but Linda told me to wait and just to let her rest. So I did.
We sat there for awhile like that, just holding and watching our sweet girl. Eventually, she did wake up a bit and we talked to her in quiet voices. I don't remember at which point Linda noticed, but sometime during our visit she pointed out that Alicia's heart was racing faster than normal. Her heartrate is usually at about 160 or 170 beats per minute. Last night, her heartrate was up to 190. Linda says that she must have been excited to see me. That made me smile. She didn't really stir too much and show me any signs that she recognized me or was glad to see me. But I do feel that in her spirit, she does sense me and know when I'm around.
I was hoping that since they'd let Linda hold her yesterday morning, that maybe I'd get my chance last night. No such luck. It's OK. Holding off will just make that moment that much sweeter when I do get to hold her.
Last night, out of curiosity, I pulled back her cover to check out her legs. Man, they'd grown! Definitely saw signs of fat rolls. Made me happy.
This morning when we went to see her, Alicia again was sleeping, but she seemed really happy. She had this sweet smile on her face as she was sleeping, and when she heard my voice the corners of her mouth curved up some more. I have no idea if she was smiling in response to my voice, or if she’s even capable of doing something like that. But it warms my heart to think that maybe my daughter does recognize and enjoy hearing my voice. The nurses tell us that Alicia actually smiles a lot. =) That’s good. I like that we have a happy baby.
We’ve also been told that she’s really smart and has a bit of a naughty streak. Hmm… I wonder where she gets that from. Haha. (Oh, for those of you who don’t know. I’m actually a bit of a prankster.) Alicia apparantly, at some point this past week, was somehow able to push herself so far that she tumbled out of her makeshift bed inside the incubator. Don’t worry, she didn’t actually fall out of the incubator, and she wasn’t actually hurt, but the nurse definitely got a scare. Hearing this story, I still have no idea how that is physically possible, but our daughter, she somehow figured out a way. She also apparantly is quite aware and smart. They’ve got this monitor that they tape to one of her appendages. It’s a light that monitors her blood oxygen levels. The problem with this monitor is that whenever Alicia moves, it will have a hard time getting an accurate reading, so the monitor will show that her blood oxygen levels have dropped, setting off the alarm, causing the nurses to rush over. Yeah, well, our daughter, according to the nurses, always knows which hand or foot the monitor is on. Whenever no is really watching her, she will move the appropriate hand or foot setting off the alarms. The first few times it happened the nurse thought it was just a fluke, so she did an experiment. She moved the sensor from one foot to the other, then from foot to hand, then to the other hand. Each time, Alicia knew exactly which one to move to set off the alarms. Smart little girl. I mean, I don’t know if it’s a conscious thing, but either way, smart little girl. =) The nurse was wondering if maybe Alicia was a bit insecure, and that’s why she always likes to have someone watching her. Linda thought about it and told her, that it’s more likely that both she and I like to interact with people, and Alicia has probably inherited that from us. Haha… so young and already loves the spotlight. I think we’re going to need to watch out for that.
And all y’all uncles and aunties, don’t you be spoiling our little girl. =) Haha. I know the temptation, but you just be careful. =)
As far as the stats go. Alicia is up to 1026 grams today! Soon and very soon, we’ll get to get her off that ventilator and we’ll get to bring her home. At about 1200 grams, they think she’ll be strong enough to get off the ventilator, so we pray for that weight to come quickly. Then at about 1500 grams if everything is stable and she’s eating and breathing on her own then she can move to the step-down unit upstairs. Then when she’s over 2000 grams and everything is going well, we’ll get to take her home. When all of this started, that day seemed so distant, it felt nearly non-existant. But now we can see it as if we’re in a plane circling for a landing looking at the city down below us. We can see the destination, but we’ve still got sometime before we arrive. But we will get there we will.
Her breathing is doing better and better. Today, I saw that her settings were down to about 25% - 30% oxygen when she’s eating. I asked the nurses what her normal settings are like, and she said that she can breathe pretty well at about 21%-25% oxygen. Now we just have to get the other vent setting down, the frequency of vent puffs. Right now she’s getting about 15 puffs/minute by vent. We want to get down to where she can breathe on her own as much as possible.
In other news, the twin boy who’s sister had passed away, is doing really well! He’s actually graduated from our NICU and is now upstairs in the step-down unit. We look forward to the day when we can also move up. But in the meantime we just stay thankful for each day that we do have with our sweet girl.
As always thanks for all of your prayers and love. We appreciate all of you!
They started visiting hours early last night, so by the time we got to the NICU, the doors were already open, so after washing our hands and putting on our smocks, we just went right in. Alicia was in her usual spot and she was resting peacefully. The other mothers whom we've become friends with now, greeted me and welcomed me back warmly as I stepped closer to get a better look at my little girl. She looked good, definitely bigger than the last time I saw her. I spoke to her, opened the incubator and put my hand through and laid it over her. As I did, she stirred a bit and opened her eyes. I started to talk to her again, but Linda told me to wait and just to let her rest. So I did.
We sat there for awhile like that, just holding and watching our sweet girl. Eventually, she did wake up a bit and we talked to her in quiet voices. I don't remember at which point Linda noticed, but sometime during our visit she pointed out that Alicia's heart was racing faster than normal. Her heartrate is usually at about 160 or 170 beats per minute. Last night, her heartrate was up to 190. Linda says that she must have been excited to see me. That made me smile. She didn't really stir too much and show me any signs that she recognized me or was glad to see me. But I do feel that in her spirit, she does sense me and know when I'm around.
I was hoping that since they'd let Linda hold her yesterday morning, that maybe I'd get my chance last night. No such luck. It's OK. Holding off will just make that moment that much sweeter when I do get to hold her.
Last night, out of curiosity, I pulled back her cover to check out her legs. Man, they'd grown! Definitely saw signs of fat rolls. Made me happy.
This morning when we went to see her, Alicia again was sleeping, but she seemed really happy. She had this sweet smile on her face as she was sleeping, and when she heard my voice the corners of her mouth curved up some more. I have no idea if she was smiling in response to my voice, or if she’s even capable of doing something like that. But it warms my heart to think that maybe my daughter does recognize and enjoy hearing my voice. The nurses tell us that Alicia actually smiles a lot. =) That’s good. I like that we have a happy baby.
We’ve also been told that she’s really smart and has a bit of a naughty streak. Hmm… I wonder where she gets that from. Haha. (Oh, for those of you who don’t know. I’m actually a bit of a prankster.) Alicia apparantly, at some point this past week, was somehow able to push herself so far that she tumbled out of her makeshift bed inside the incubator. Don’t worry, she didn’t actually fall out of the incubator, and she wasn’t actually hurt, but the nurse definitely got a scare. Hearing this story, I still have no idea how that is physically possible, but our daughter, she somehow figured out a way. She also apparantly is quite aware and smart. They’ve got this monitor that they tape to one of her appendages. It’s a light that monitors her blood oxygen levels. The problem with this monitor is that whenever Alicia moves, it will have a hard time getting an accurate reading, so the monitor will show that her blood oxygen levels have dropped, setting off the alarm, causing the nurses to rush over. Yeah, well, our daughter, according to the nurses, always knows which hand or foot the monitor is on. Whenever no is really watching her, she will move the appropriate hand or foot setting off the alarms. The first few times it happened the nurse thought it was just a fluke, so she did an experiment. She moved the sensor from one foot to the other, then from foot to hand, then to the other hand. Each time, Alicia knew exactly which one to move to set off the alarms. Smart little girl. I mean, I don’t know if it’s a conscious thing, but either way, smart little girl. =) The nurse was wondering if maybe Alicia was a bit insecure, and that’s why she always likes to have someone watching her. Linda thought about it and told her, that it’s more likely that both she and I like to interact with people, and Alicia has probably inherited that from us. Haha… so young and already loves the spotlight. I think we’re going to need to watch out for that.
And all y’all uncles and aunties, don’t you be spoiling our little girl. =) Haha. I know the temptation, but you just be careful. =)
As far as the stats go. Alicia is up to 1026 grams today! Soon and very soon, we’ll get to get her off that ventilator and we’ll get to bring her home. At about 1200 grams, they think she’ll be strong enough to get off the ventilator, so we pray for that weight to come quickly. Then at about 1500 grams if everything is stable and she’s eating and breathing on her own then she can move to the step-down unit upstairs. Then when she’s over 2000 grams and everything is going well, we’ll get to take her home. When all of this started, that day seemed so distant, it felt nearly non-existant. But now we can see it as if we’re in a plane circling for a landing looking at the city down below us. We can see the destination, but we’ve still got sometime before we arrive. But we will get there we will.
Her breathing is doing better and better. Today, I saw that her settings were down to about 25% - 30% oxygen when she’s eating. I asked the nurses what her normal settings are like, and she said that she can breathe pretty well at about 21%-25% oxygen. Now we just have to get the other vent setting down, the frequency of vent puffs. Right now she’s getting about 15 puffs/minute by vent. We want to get down to where she can breathe on her own as much as possible.
In other news, the twin boy who’s sister had passed away, is doing really well! He’s actually graduated from our NICU and is now upstairs in the step-down unit. We look forward to the day when we can also move up. But in the meantime we just stay thankful for each day that we do have with our sweet girl.
As always thanks for all of your prayers and love. We appreciate all of you!
Friday, July 29, 2011
A Day for Celebration
My heart is so full right now. It's been an amazing day of milestones, and it's only half over!
First milestone, Alicia is 2 months old today. Man, do they grow quickly. I'll admit that going through it, sometimes it does feel like time is crawling, but when I look back, I can't imagine that it's already been two months! We've made it two months, and the journey has barely begun.
Second milestone, Alicia has finally, FINALLY, broken 1000!!! Yahoo! She's 1006 grams today. Bigger and bigger each day. I'm so so thankful. The bigger she gets, the more strength she'll have to be able to breathe on her own, and the more mature her organs and muscles will be. And the sooner we can bring her home.
Third and greatest milestone of all, Linda got to hold Alicia for the first time today! After her morning visit with Alicia, the nurse asked Linda if she would want to hold Alicia. And of course, Linda jumped at the chance. So the nurse told her to just hang behind a bit after visiting time, and once the other parents had cleared out, they'd let Linda hold her. I wish I was there to see it, but just hearing Linda tell me about it, I felt my tears welling. Linda said that they were pretty quick about disconnecting the vent, pulling her out, reconnecting the vent and wrapping her up, and then placing her in Linda's arms. Alicia was asleep when they took her out. But as Linda held her, she opened her eyes and started looking around even smiled a bit. Linda said that it was, naturally, an amazing experience -- so different than just touching her and looking at her with a plastic barrier limiting your interactions. As I listened to Linda tell me about this precious moment, my heart ached to wrap my daughter in my arms, to hold her and touch her and have her be close to me. My time will come soon, I'm sure.
There's also lots to pray about today.
1. Alicia is still on the vent now after two months. The good news is her vent settings are pretty low. However, she still has a bit of trouble when she's eating, but she's getting better. Also, she's still not strong enough yet to breath on her own. Doctor said this should improve as she packs some meat on her bones. The bigger she gets the stronger she should get as well. They've tried setting the vent to manual, and letting Alicia try to breathe on her own. And she's able to do it for a few minutes, but then it ends up being too taxing on her. So the doctor says she needs to be on the vent for a bit longer. She's guessing that maybe by about 1200 grams she should be stronger and be able to breathe better on her own. Let's pray that it'll happen sooner than that.
2. She's still got a lot of mucus that they need to clear out intermittently. But again, nothing to worry too much about. We pray that this will clear up soon.
3. Doctors have done a brain scan, and she's still got the lesions in her brain. However, after observing her movements and muscles, the great news is that they think she's developing pretty well. They'll definitely need to keep checking up on her and have the physical therapist do follow up examinations to check on her development as she grows. Pray for her muscles and physical development.
4. Alicia had an eye appointment earlier this week. They doctor found some abnormal blood vessel growth near her iris, most likely caused by her extensive use of the oxygen. At first, when her ROP was only at level 1, they only did eye exams once every couple of weeks. Now, with this new growth, they'll be doing exams every week. Right now, they're using some medicinal eye drops to stunt the growth. But these drops have limited effectiveness. Pray that her eyes would develop healthy and strong.
5. We've asked when we might be able to do Kangaroo Care (getting to hold Alicia skin to skin for extended periods of time). Kangaroo Care has proven to be extremely beneficial for children and parents. Doctor says that she needs to be a bit bigger. Of course, my natural instinct and desire is to do it as soon as possible. In fact, some hospitals do let parents do it even if the kid is on the ventilator. But at our hospital, they want her to be off the ventilator. So we just trust the doctors. My sense is that once we can start doing this, Alicia will grow in leaps and bounds. Pray with us that this can happen soon and very soon.
I believe the main thing right now is to get her bigger and stronger. She's eating up at 17cc per feeding now. So that's great. I feel like all the things she's struggling with right now will resolve themselves as she gets bigger. Once she's bigger, she can breathe better on her own. When she can do that, she can get off the ventilator. Then she won't need to use the oxygen that is so damaging to her body, which will hopefully stop the abnormal blood vessel growth in her eyes and clear up the mucus. Then we can do Kangaroo care and that will hopefully help her and us to bond even more and then she can grow even faster and stronger.
So BIGGEST prayer, that she will be stronger and stronger!
I'll be going down to see my girls tonight. I can't wait to see them and give them both HUGE HUGS.
Love,
Campbell
First milestone, Alicia is 2 months old today. Man, do they grow quickly. I'll admit that going through it, sometimes it does feel like time is crawling, but when I look back, I can't imagine that it's already been two months! We've made it two months, and the journey has barely begun.
Second milestone, Alicia has finally, FINALLY, broken 1000!!! Yahoo! She's 1006 grams today. Bigger and bigger each day. I'm so so thankful. The bigger she gets, the more strength she'll have to be able to breathe on her own, and the more mature her organs and muscles will be. And the sooner we can bring her home.
Third and greatest milestone of all, Linda got to hold Alicia for the first time today! After her morning visit with Alicia, the nurse asked Linda if she would want to hold Alicia. And of course, Linda jumped at the chance. So the nurse told her to just hang behind a bit after visiting time, and once the other parents had cleared out, they'd let Linda hold her. I wish I was there to see it, but just hearing Linda tell me about it, I felt my tears welling. Linda said that they were pretty quick about disconnecting the vent, pulling her out, reconnecting the vent and wrapping her up, and then placing her in Linda's arms. Alicia was asleep when they took her out. But as Linda held her, she opened her eyes and started looking around even smiled a bit. Linda said that it was, naturally, an amazing experience -- so different than just touching her and looking at her with a plastic barrier limiting your interactions. As I listened to Linda tell me about this precious moment, my heart ached to wrap my daughter in my arms, to hold her and touch her and have her be close to me. My time will come soon, I'm sure.
There's also lots to pray about today.
1. Alicia is still on the vent now after two months. The good news is her vent settings are pretty low. However, she still has a bit of trouble when she's eating, but she's getting better. Also, she's still not strong enough yet to breath on her own. Doctor said this should improve as she packs some meat on her bones. The bigger she gets the stronger she should get as well. They've tried setting the vent to manual, and letting Alicia try to breathe on her own. And she's able to do it for a few minutes, but then it ends up being too taxing on her. So the doctor says she needs to be on the vent for a bit longer. She's guessing that maybe by about 1200 grams she should be stronger and be able to breathe better on her own. Let's pray that it'll happen sooner than that.
2. She's still got a lot of mucus that they need to clear out intermittently. But again, nothing to worry too much about. We pray that this will clear up soon.
3. Doctors have done a brain scan, and she's still got the lesions in her brain. However, after observing her movements and muscles, the great news is that they think she's developing pretty well. They'll definitely need to keep checking up on her and have the physical therapist do follow up examinations to check on her development as she grows. Pray for her muscles and physical development.
4. Alicia had an eye appointment earlier this week. They doctor found some abnormal blood vessel growth near her iris, most likely caused by her extensive use of the oxygen. At first, when her ROP was only at level 1, they only did eye exams once every couple of weeks. Now, with this new growth, they'll be doing exams every week. Right now, they're using some medicinal eye drops to stunt the growth. But these drops have limited effectiveness. Pray that her eyes would develop healthy and strong.
5. We've asked when we might be able to do Kangaroo Care (getting to hold Alicia skin to skin for extended periods of time). Kangaroo Care has proven to be extremely beneficial for children and parents. Doctor says that she needs to be a bit bigger. Of course, my natural instinct and desire is to do it as soon as possible. In fact, some hospitals do let parents do it even if the kid is on the ventilator. But at our hospital, they want her to be off the ventilator. So we just trust the doctors. My sense is that once we can start doing this, Alicia will grow in leaps and bounds. Pray with us that this can happen soon and very soon.
I believe the main thing right now is to get her bigger and stronger. She's eating up at 17cc per feeding now. So that's great. I feel like all the things she's struggling with right now will resolve themselves as she gets bigger. Once she's bigger, she can breathe better on her own. When she can do that, she can get off the ventilator. Then she won't need to use the oxygen that is so damaging to her body, which will hopefully stop the abnormal blood vessel growth in her eyes and clear up the mucus. Then we can do Kangaroo care and that will hopefully help her and us to bond even more and then she can grow even faster and stronger.
So BIGGEST prayer, that she will be stronger and stronger!
I'll be going down to see my girls tonight. I can't wait to see them and give them both HUGE HUGS.
Love,
Campbell
Tuesday, July 26, 2011
Faith and Righteousness
I’ve started working again. I have to admit, while I hate the idea of being away from Linda and Alicia, it is good to get back to a routine and to be productive again.
Any of you who have been following this blog know that during my weeks off, one of my greatest struggles was trying to be productive with my time. I struggled with wanting to do things and to be accomplished, but not having the energy or motivation to do it. I felt like I was being lazy, yet I really couldn’t get myself to do anything worthwhile.
I think a lot of my struggle comes from a few things. The first thing is my desire to provide for my family. As the head of my household, I do feel the responsibility of providing is on my shoulders. This doesn’t mean that it’s solely on my shoulders, as in Linda can’t work or earn money. But the choice came down to Linda or I working, I believe that it should be me. Of course, there are other ways to earn money too, but I won’t get into that here. My point is, I had two months off, and instead of being thankful for the rest, I felt guilty. I felt like I wasn’t doing my part to provide. But as I write this, I feel God gently stirring my heart saying, that to provide for a family is so much more than just making money. Wow. Epiphany.
The second part of my struggle comes from my desire to do great things.
We have chapel every morning where I work. And on Monday mornings, chapel is a time to prepare for the week’s work and also to update everyone on company business. Yesterday, they showed a trailer for a new theme park they are building in China. The theme park is based on a series of books created by Davy Liu, a Christian animator who used to work for Disney. Davy has written and illustrated a series of children’s books based on stories from the Bible like Noah’s Ark, Daniel and the Lion’s Den, Moses and the Red Sea, etc… These books tell these Bible stories from the perspective of various animals that were a part of these events. It’s really interesting stuff. I really admire Davy, because he’s taken the talent that God has given to him and he’s making something great out of it. All this to say that, when I saw the trailer for the theme park, something bubbled up in me and I started thinking again, “When will it be my turn?” And again I struggled. Wondering if my time will never come, because I’ve wasted too much of my time in the past.
My Daddy God is so sweet. This morning, even though I wasn’t actively seeking to find the answer to my struggle, he gave me the answer. Over the past few days, I've been reading about Abraham, one of the great characters of Biblical history. I’ve read this story, many times, but today as I was reading, one line jumped out at me. Genesis 15:16 – “Abram believed the Lord, and he credited it to him as righteousness.”
God had given Abraham, or Abram, as he was called at that time, a series of promises. And after some discussion with the Lord, Abram believed that what God said would happen, would happen.
Now the reason this verse jumped out at me was because God immediately brought to mind another passage in the Bible. Matthew 6:31-34 – "So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Did you see it? “Do not worry about these things. But seek first his kingdom and his RIGHTEOUSNESS. Again, I’ve read this verse more times than I can count, and I’ve always wondered, well, great, but what is his righteousness? How can I seek something, if I don’t know what it is? I always thought righteousness was simply to do good, to do right. But now I realize, that there’s more than that. Abram believed the Lord and it was credited to him as righteousness.
So if I put these two verses together, it seems that God is simply asking us to believe. He wants us to believe that his promises will be true, this is righteousness.
Now this isn't to say that I can just sit on my butt, and just believe that good things will happen and it will. But it does mean that I shouldn't worry. That I keep walking with the Lord, and following him, believing in his promises and his goodness and he will take care of the rest. I feel like I'm probably repeating myself, but it was just something that God showed me this morning once again in a new way, so I thought I'd share.
About Alicia, exciting news! She as of last night's weighing is 998 grams! She's probably over 1000 grams by now! Yahoo! She's getting closer and closer to being able to get out of that incubator, and we're getting closer and closer to being able to hold her. Now we just have to get her off that ventilator.
Please pray for that. We're praying that we can hold her by August 8 - Taiwanese Father's Day! =) Another thing to pray about is her eyes. Her ROP is still at level 1, but the doctor saw a potential problem with her eyes. They didn't elaborate on it, other than to say that it was probably nothing to worry about, but they're going to do a followup appointment next week to see how she's doing. Pray that if there's a problem, that it would go away, whatever it may be.
Soon and very soon our family will be together back home once again. I believe. I believe! We keep moving forward in faith. In a way, that's all we really can do. =)
Any of you who have been following this blog know that during my weeks off, one of my greatest struggles was trying to be productive with my time. I struggled with wanting to do things and to be accomplished, but not having the energy or motivation to do it. I felt like I was being lazy, yet I really couldn’t get myself to do anything worthwhile.
I think a lot of my struggle comes from a few things. The first thing is my desire to provide for my family. As the head of my household, I do feel the responsibility of providing is on my shoulders. This doesn’t mean that it’s solely on my shoulders, as in Linda can’t work or earn money. But the choice came down to Linda or I working, I believe that it should be me. Of course, there are other ways to earn money too, but I won’t get into that here. My point is, I had two months off, and instead of being thankful for the rest, I felt guilty. I felt like I wasn’t doing my part to provide. But as I write this, I feel God gently stirring my heart saying, that to provide for a family is so much more than just making money. Wow. Epiphany.
The second part of my struggle comes from my desire to do great things.
We have chapel every morning where I work. And on Monday mornings, chapel is a time to prepare for the week’s work and also to update everyone on company business. Yesterday, they showed a trailer for a new theme park they are building in China. The theme park is based on a series of books created by Davy Liu, a Christian animator who used to work for Disney. Davy has written and illustrated a series of children’s books based on stories from the Bible like Noah’s Ark, Daniel and the Lion’s Den, Moses and the Red Sea, etc… These books tell these Bible stories from the perspective of various animals that were a part of these events. It’s really interesting stuff. I really admire Davy, because he’s taken the talent that God has given to him and he’s making something great out of it. All this to say that, when I saw the trailer for the theme park, something bubbled up in me and I started thinking again, “When will it be my turn?” And again I struggled. Wondering if my time will never come, because I’ve wasted too much of my time in the past.
My Daddy God is so sweet. This morning, even though I wasn’t actively seeking to find the answer to my struggle, he gave me the answer. Over the past few days, I've been reading about Abraham, one of the great characters of Biblical history. I’ve read this story, many times, but today as I was reading, one line jumped out at me. Genesis 15:16 – “Abram believed the Lord, and he credited it to him as righteousness.”
God had given Abraham, or Abram, as he was called at that time, a series of promises. And after some discussion with the Lord, Abram believed that what God said would happen, would happen.
Now the reason this verse jumped out at me was because God immediately brought to mind another passage in the Bible. Matthew 6:31-34 – "So do not worry, saying, 'What shall we eat?' or 'What shall we drink?' or 'What shall we wear?' For the pagans run after all these things, and your heavenly Father knows that you need them. But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
Did you see it? “Do not worry about these things. But seek first his kingdom and his RIGHTEOUSNESS. Again, I’ve read this verse more times than I can count, and I’ve always wondered, well, great, but what is his righteousness? How can I seek something, if I don’t know what it is? I always thought righteousness was simply to do good, to do right. But now I realize, that there’s more than that. Abram believed the Lord and it was credited to him as righteousness.
So if I put these two verses together, it seems that God is simply asking us to believe. He wants us to believe that his promises will be true, this is righteousness.
Now this isn't to say that I can just sit on my butt, and just believe that good things will happen and it will. But it does mean that I shouldn't worry. That I keep walking with the Lord, and following him, believing in his promises and his goodness and he will take care of the rest. I feel like I'm probably repeating myself, but it was just something that God showed me this morning once again in a new way, so I thought I'd share.
About Alicia, exciting news! She as of last night's weighing is 998 grams! She's probably over 1000 grams by now! Yahoo! She's getting closer and closer to being able to get out of that incubator, and we're getting closer and closer to being able to hold her. Now we just have to get her off that ventilator.
Please pray for that. We're praying that we can hold her by August 8 - Taiwanese Father's Day! =) Another thing to pray about is her eyes. Her ROP is still at level 1, but the doctor saw a potential problem with her eyes. They didn't elaborate on it, other than to say that it was probably nothing to worry about, but they're going to do a followup appointment next week to see how she's doing. Pray that if there's a problem, that it would go away, whatever it may be.
Soon and very soon our family will be together back home once again. I believe. I believe! We keep moving forward in faith. In a way, that's all we really can do. =)
Subscribe to:
Posts (Atom)