Is it narcissism if you heart swells with pride each time someone comments on how beautiful your daughter is? Cause seriously, I can't get enough of it. =)
Today, during Linda's morning visit, they needed to give Alicia eye drops in preparation for her eye appointment. No sooner had they taken off her blindfold than four or five nurses all made a beeline for our incubator to coo and ogle Alicia. And of course Alicia was eating up all the attention. Linda says that as she was being held and surrounded by all these people, she just looked up at everyone with rapt attention, smiling and making cute expressions. Our little girl, such a ham already. Where in the world does she get it from? ;)
Alicia is still doing really well on her thinner nose cannula, so that's a good sign. Linda confirmed that if she does do well, then they will start making preparations to get her upstairs to the step-down unit.
Both Linda and I are excited but apprehensive about this move. I mean, our 5th floor NICU is all we've known. The nurses and hospital workers there have become our friends. It'll be really hard for us to leave, and the nurses have readily admitted that it'll be hard for them to let go of Alicia as well. Linda even asked if we could just stay in the NICU and just go home from there. =) But we'll see.
Also, with the prospect of coming home looming closer and closer, I'm becoming more acutely aware of how much more there is to prepare. People have offered to help but the problem is I don't know what I need help with!
I have no idea what I need to prepare for a newborn, let alone one with such a dramatic birth story.
While it can be nerve-wracking, I have to say that this is a VERY, VERY nice problem to be having. I mean, we're preparing for the home-coming of the queen and princess! What a celebration that will be!
Yesterday was Alicia's 3 month birthday. It's amazing to think that she's already 3 months old even though technically she wasn't supposed to be due for another 11 days. And OK, that in itself is amazing. We are 38 weeks into this journey of pregnancy and parenthood and what a ride it has been.
Thinking of our due date, I also think of my many loved ones who are due soon and very soon. My own brother and sister-in-law are anticipating their little daughter's arrival in a few weeks. Love the fact that Alicia is going to have a cousin so close in age. One of my best friends from high school is also due soon and very soon. Not to mention the dozens of friends who are now pregnant and will be expecting in a few months. What an exciting time, huh? A new generation is sprouting!
Right before I sat down to write this, I just got off the phone with the NICU, and can I just say that I appreciate nurses who are pleasant? Sometimes, I call and it's all business, the nurse gives the stats and gets off the phone. On occasion I'll get a sweet nurse who actually sounds genuinely happy to talk to me and I will actually chat with them for a few minutes and hear stories of Alicia's exploits throughout the evening.
But I digress.
This morning I had a really, really encouraging phone call with the NICU nurse. It's 6:30 in the morning right now and I think her words were the perfect boost to start my day. She told me that Alicia has been on the thinner nasal cannula for 8 hours already, and other than when she's eating, she's breathing super well! So here are the words that I've been waiting to hear for an eternity. The nurse said that one of the doctors came by and checked on her and said that Alicia will probably move upstairs to the step-down unit soon! AHHH!!!!!!!! OK. So it's not for sure yet, and there are no dates set. But they're going to observe her for a few more days. If she continues to progress the way she has been, we'll be upstairs soon and very soon.
It was cute, when the nurse told me this information she said that all the nurses were a little sad, because they've grown quite attached to our little Alicia. She's really won over their hearts.
We've still got some time before Alicia can come home for good, but friends this is a glimmer of hope. It's a glimpse of the finish line that gives these weary athletes the needed boost to push through the last few meters of the race. Yahoo!
Fact is though that once our NICU marathon is over, we'll be entering into a new race called, "parenthood." Please pray for that transition, and pray that God would prepare us to receive our little Alicia and integrate her flawlessly into our family. Pray that Linda and I will be able to know how to care for her and that God would continue to cover over her and help her to thrive.
All the nurses truly do love Alicia. Since she's one of two babies that are stable enough to hold, Alicia gets lots of love and holding from the nurses in the NICU. She really loves the attention as well. She'll be fussing in her incubator and the nurses will pat her on the butt and she'll go right back to sleep. Of if they take her out and hold her for awhile, she'll stop crying and look at everyone as if she doesn't have a care in the world. But, as I've said before, once she gets put back, she does not like it. I think we'll need to work on that a bit in the future. =) Don't want her to get spoiled.
Although, I have to say after so long of her not being able to make a sound, I do appreciate being able to hear her voice and her cry. It's really sweet, not something I'm going to take for granted at all.
The nurse this morning commented again on Alicia's eyes and on how big, bright and full of life they were. This I believe is God living in her. She's got a bright future this little one. I believe it!
The nurses in the NICU are really cute. About a month ago, I bought a notebook so that we could collect Alicia's handprints and footprints as she gets bigger. (Alicia by the way hates getting her hands and feet stamped. Ahh, the princess who loves being clean.) Somehow this notebook has turned into a message board between us and the nurses. It's sweet. The nurses will leave notes about what Alicia did and various milestones. They'll write nice messages encouraging us and Alicia to keep going. We'll definitely miss our new friends after we come home.
In other news, Alicia is loving the bottle and eating like a champ. She's not always able to take all of her milk from the bottle because it just gets too tiring for her, but most of the time she is able to get at least half of her milk down on her own. Those times when Alicia can't finish the bottle, she'll cry because she really likes eating on her own. Talk about Miss Independent.
I know I've said it before, but I have to say it again, thank you friends for all of your prayers, all of your love and all of your support. I do really want to hear from you, so if you've been holding off on contacting us for fear of bothering us, please don't hold off any longer. I want to hear how things are going for you.
We're doing really well. As I said in my last post, I marvel at the journey that the Lord has brought us through in the last 3 months. It's been an amazing privilege to walk through this time and to be able to see and touch our daughter at a time when she shouldn't even be born yet. To be able to witness this miracle has been awe-inspiring.
Please do continue to keep us uplifted, and get ready because Alicia's coming out . . . for the second time! =)
These past few days I have just been struck with wonder and amazement at how far we've come.
Over the past week our NICU has become packed with new residents. There are several pairs of twins and some singletons, all weighing in under 700 grams. Tiny, tiny little ones. In our time at the NICU we've seen dozens of kids and families come in and out, but I think as Alicia gets bigger and stronger, and the gap between her condition and others gets wider and wider the more aware I become of just how much the Lord has done.
As I look at our chubby little girl, and then I look around at her new neighbors, I can't help but be filled with a sense of gratitude. I look at these tiny little bodies, all skin and bones, and then I look at our girl who is filling out quite well, and it just amazes me how far we've come and I can't help but revel in God's faithfulness these past three months.
These past three months have really gone by in a blur, and yet it's amazing how quickly the sight of these new little lives transports me back to those early days when Alicia weighed barely over a pound .
It seemed like just yesterday when we ourselves arrived in the NICU, teary, wide-eyed and anxious. Hanging on our doctors and nurses' every word, listening for every glimmer of hope that our little girl was going to be OK, and being struck deeply in the heart each time the prognosis was slightly negative.
I see the little droplets of water on the inside of the new babies' incubators and I am reminded of my first few days with tiny Alicia trying to take pictures of her, but getting frustrated because the condensation was preventing me from getting a good angle.
I look around at the new parents and recognize in their faces the same agonizing fears that Linda and I experienced when we first set foot in the NICU. I see them huddled in front of their children's incubators having hushed conversations with doctors and I can only imagine the stress and anxiety that must be floating through their minds and hearts.
I see a nurse sitting in front of one of the incubators, one hand on the ventilator, one hand inside the incubator trying to resuscitate a little person who has just forgotten to breathe and I am reminded of how not too long ago, Linda and I often had to step aside during our visits so that a nurse could step in and revive Alicia after she had another apnea spell.
I hear the beeps of the monitor, and I instinctively want to take my eyes off Alicia and check her monitor to make sure that her oxygen is at a good level only to remember half-second later that Alicia no longer has a monitor that beeps and that she's breathing well enough that for the most part her oxygen levels are holding steady at 100%.
It feels strange to hear parents around us having the same conversations with their children that we ourselves had with Alicia not but two weeks ago. Conversations where we remind, even pleaded with our daughter to breathe and to focus on growing healthy and strong. Conversations where we assured her of our love and that she was doing great.
We hear questions coming from the parents that we ourselves have asked, and we hear the nurses give answers that only now am I realizing must be things that they say over and over and over again.
I look at these little ones whose skin is so translucent that you can see the color of the blood flowing beneath, and I marvel at how our little girl is now chubby and rosy-cheeked. I rejoice at how she has really filled out and lost a lot of her excess body hair so that she looks more and more like a regular, healthy baby, and not so much like some skinny alien monkey.
Two great pieces of news today is that Alicia has broken 1500 grams. She weighed in at 1508 grams today! Praise the Lord! =) Also, what's even better is that she's eating on her own!
Before last night, Alicia was taking in all of her milk through a feeding tube. Yesterday, they tried to feed her with a bottle just to see how well she'd do, and she loved it! The first time they fed her this way, the nurse said she liked it but she was really confused. She didn't quite know what to do with this strange liquid that was passing through her mouth for the first time. The second time they fed her, she took the milk in like a pro. They were able to feed her up to 18cc, and she wanted more, but the nurse saw that she was panting and exerting a lot energy, so she decided it'd be better to give the rest of her milk through the tube.
This evening when we got to the NICU, there was an empty milk bottle on top of her incubator. I thought that the nurse had just forgotten to put it away after feeding her, so I moved it. But the nurse came rushing over and said, "Daddy! That bottle is precious! It's Alicia's victory bottle. She drank that bottle all by herself today!" Yahoo! Alicia drank all 27cc of her milk all by herself from a bottle. That's HUGE!
The nurse said that they did have to stop in between because she got a little tired from the exertion, but that Alicia loved drinking the milk on her own, and when they stopped in between, she seemed eager to drink more. Also, a couple of nurses told us that Alicia seemed more well-behaved today after having switched to the bottle-feeding. Haha. Another encouraging thing is that originally they tried Alicia on a special nipple for preemies. It's a softer nipple and I think it regulates the flow of the milk. Alicia didn't really like that nipple, so they tried her on a nipple for regular babies, and she loved it!
For those of you who have been following our journey, you'll remember that one of the requirements of her being able to go home is that she needs to be able to take all of her feedings by mouth. So this is definitely a huge step in the right direction.
Alicia just gets cuter and cuter each and every day. And I just love, love my kangaroo time with her. It just feels so right to hold her in my arms, on my chest and to just have her sleep there completely at peace. It really amazes me how well she rests that way. She barely stirs when she's in my arms. Tonight after the evening visit, the nurses let us hold Alicia again. We didn't do Kangaroo time, but we did cradle her in our arms for about 30 min. I loved it. I loved looking at our daughter's round cheeks and smooth white-skin and just soaking in the wonder of this little gift that the Lord has given to us. I can't wait for the day when all the extra trappings - the tubes, wires, blindfold, and head wrap - are all removed, and we can finally see the fullness of the beauty our Lord has created in our daughter.
We're getting there friends. We really are! =) Keep praying.
It's been said that the eyes are the window to the soul. The eyes reveal much about what a person is thinking, feeling and experiencing.
I really miss seeing my daughter's eyes. Since her laser procedure Alicia's eyes have been covered for a majority of the time. As I look at pictures of her now, and I spend time with her in the NICU, it's not the same. Don't get me wrong, I cherish each photo I receive from Linda, and each moment I get to spend with her. There is a certain amount of satisfaction and pride that I feel as I watch her cheeks get progressively rounder and her legs and arms get gradually thicker and thicker. I mean it's not like I'm doing anything physically to make this growth happen, but you know, there's a certain amount of pride involved when God is accomplishing something great in your child.
But back to what I was saying, while I enjoy each moment I have with my daughter, there's is just something about being to see her eyes and have her be able to "see" me. For those of you who have seen pictures you'll know that Alicia has these huge, beautiful eyes that are so bright and full of life. Her eyes are so expressive and so alive. And when I look into them, there is this connection. When her eyes are covered it's like you're interacting with someone who is on the other side of way mirror. You can hear them, you can see them, but they aren't aware of you.
Having said that, though, I do know that Alicia is still aware of us when we are around. There are certain moments throughout our visits with her that she gets stressed for one reason or another, and I see definitely that our voices and our touch really do help to calm her down and bring her peace.
And I also know that all of this is temporary. Her eyes will not be permanently covered. And I know she will see and see well. I can't wait.
Speaking of seeing, I do want to challenge all of you with something. How do you see your life?
What are you focusing on? What about the people around you? How do you see them?
Since Alicia's birth, I've felt challenged in my heart over and over about how I look at Alicia and our new role as her parents. On the one side, I can choose to look at her like a sickly child, one that needs special care, and must be handled with kid gloves. Or I can see her as a healthy child that has had a unique birth and first few months.
How I see, determines how I act, and the way I act they kind of life I live.
I've heard stories of parents of preemies who pretty much isolated themselves from the outside world after being discharged from the hospital for fear of their child getting sick and needing to be back in the hospital. Now, I definitely understand the concern. It's a very real fear, and a very legitimate thing to be concerned over. Scientific studies have shown that children who were born early are more susceptible to viruses and infections because their immunity isn't as strong. And we parents are often cautioned to avoid bringing our beloved children to places with too many people for fear of catching illnesses.
There are even stories of kids being discharged from the hospital and then catching a cold or pneumonia and then ending up back in the hospital or even dying.
Hearing all of this, it's hard not to worry. It's hard not to want to put Alicia in a plastic bubble and not allow her out until she's 18. Maybe I should build a tower, seal off the door and grow her hair out so I can use it to climb up to her. Haha. I jest.
But seriously, it's easy to get anxious. But I do not believe that the Lord wants us to live a life of fear. In fact, I am sure he does not want us to live a life of fear. Fear is bondage. Some of you may not realize that. But the fear, the worries that you decide to mull over and over and over again in your head, your under bondage! Think about it. How often have you wanted to do something, but you don't because you are afraid. How much of your life have you missed out on because you've allowed fear to control your life.
That's no life. Jesus said, "I've come that you have life and have it more abundantly." (FYI, I just did a search for this verse in Google and the first site that came up was a site about pregnancy. =) Isn't God cool?) Jesus gave up his life so that we could be free. Free from the bondage of sin, free from the bondage of bad habits, free from the bondage of lies. Free! Yet, so many of us are NOT living lives of freedom.
We worry about money. We worry about illnesses. We worry, worry, worry. We think we're being responsible, but we're being trapped.
Now I'm not advocating being reckless. I'm not saying that we're going to let everyone and anyone come and see Alicia and cough all over her and we won't care. No! And of course we're going to watch where we take her and how long we spend there. We are going to be wise and pray for wisdom. But truly we're not going to live in fear of what might happen.
Alicia is God's child. She is on loan to us for the time being. And we want to take care of her the best way that we can. But I do not believe that this means keeping her under quarantine for months until the "threat" has passed. Our God is MIGHTY to save. Our God is GREATER! Our God has CONQUERED the GRAVE!
Alicia has already died once and God sent her back. She has a purpose and destiny to fulfill on Earth. So we rejoice! We celebrate. And we live in anticipation and not fear.
So thank you for all of your love, prayers and concerns. But I ask for all of you to choose to see and focus on the wonderful life that Alicia can and will live. Do not focus on all the negative things that can happen. Pray for God's protection and provision. Pray for her to thrive. Don't pray that she won't get sick and that she won't be weak.
Celebrate with us! Don't worry over us. Celebrate because Alicia is doing great! Celebrate that she is a miracle. Celebrate that she is full of life and full of spunk. Celebrate!
Pray that Linda and I would have wisdom and insight into how to take care of this precious gift in the best way possible. Ask for God to show us what things to avoid, and what things to enjoy. Ask him to direct us. And ask him to speak to your hearts as well. Ask him to show you how you can live your life in freedom and not under bondage.
I truly believe that to live in fear is dishonoring to God. You want to bring God glory? Then learn to trust, learn to have faith! Believe me, it's not easy!
I am speaking so adamantly because I'm speaking to myself as well! I have my moments of doubt and fear for sure. But this is me proclaiming and battling for my family, and for you guys. Let's live lives of boldness! Let's live lives of confidence.
God tells us, his children, "So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10.
GOD WILL UPHOLD US! He will protect us.
What if we mess up? Well, then there's grace. And his grace is ever ever abundant and it will never run out. =)
And if I may ask a favor, in giving us advice and showing your love, can you focus on encouraging us and not warning us? Help us to find wisdom on the best way to care for Alicia. What are some things that we CAN do to help her to get even stronger and healthier. Focus on, "Do this and this because, we hear it has this and this benefit." not "Don't do this and don't do this, because we hear that it can cause this and this harm." The former would really help us a lot more, I believe.
Thanks friends.
Before I go, some quick stats.
1. Alicia is 1472 grams (3.25 pounds) today. She's averaging growth of about 100 grams/week.
2. She's eating about 26 or 27 cc of milk per feeding.
3. She's breathing better and better on her own.
4. She hates the nasal cannula and will often pull it out. Feisty little girl.
5. Digestion is still pretty good. She poops a lot. Yesterday, she apparently pooped on one of the nurses hands again.
6. She loves attention. The story goes that one night during bath time some nurses crowded around Alicia and started cooing over her. They all took turns holding her and talking to her. And Alicia was just looking around wide-eyed and completely soaking up the attention. As soon as she was put back into her incubator, she started bawling. She didn't want the show to be over.
7. Speaking of bath time. She loves being clean. The nurses say she loves being washed, and she hates dirty diapers.
So young and her personality is coming out already. Can't wait to see what she'll be like as she gets older. =)
Over the past few days I've been reading the book, "Choosing to See" written by Mary Beth Chapman, wife of Christian music artist, Steven Curtis Chapman. The book is a memoir of sorts for their adopted daughter Maria Sue Chapman whom the family lost when she was five years old to a tragic car accident.
While our circumstance is nowhere near as traumatic as what that family went through, a lot of what Mary wrote in the book really resonated. I recognized a lot of my own thoughts and feelings in her words. Things that I've also had to process through.
One really needs to be careful about where one reads a book like that. I mean, there were a few times on the bus or MRT that I really needed to fight to restrain my tears for fear of looking like a crazy sap who cries at books. Though I suppose that is what I am. =)
Throughout the book, they interspersed lyrics from various songs by Steven Curtis Chapman. One that stuck out to me was "Cinderella".
She spins and she sways
To whatever song plays
Without a care in the world
And I'm sitting here wearing
The weight of the world on my shoulders
It's been a long day
And there's still work to do
She's pulling at me
Saying "Dad, I need you
There's a ball at the castle
And I've been invited
And I need to practice my dancing
Oh, please, Daddy, please?"
So I will dance with Cinderella
While she is here in my arms
'Cause I know something the prince never knew
Oh, I will dance with Cinderella
I don't want to miss even one song
'Cause all too soon the clock will strike midnight
And she'll be gone...
She says he's a nice guy and I'd be impressed
She wants to know if I approve of the dress
She says, "Dad, the prom is just one week away
And I need to practice my dancing
Oh, please, Daddy, please?"
So I will dance with Cinderella
While she is here in my arms
'Cause I know something the prince never knew
Oh, I will dance with Cinderella
I don't want to miss even one song
'Cause all too soon the clock will strike midnight
And she'll be gone
She will be gone
Well, she came home today with a ring on her hand
Just glowing and telling us all they had planned
She says, "Dad, the wedding's still six months away
But I need to practice my dancing
Oh, please, Daddy, please?"
So I will dance with Cinderella
While she is here in my arms
'Cause I know something the prince never knew
Oh, I will dance with Cinderella
I don't want to miss even one song
'Cause all too soon the clock will strike midnight
And she'll be gone
Reading through the book and listening to the song, I feel like the one major message I keep hearing over and over is to cherish the moments we have with our loved ones. Truly, as cliche as this sounds, none of us are guaranteed tomorrow.
And unfortunately things in this broken world don't always go as planned. One lesson that has been impressed upon me deeply these past few years is that we can't always predict how life will go.
We think the natural progression of things is, "Get married. Get pregnant. Have kid. Raise kid. Grow old. Pass on." But in the midst of all these steps, things get so muddled.
Time after time, over these past few years, we've had friends lose one child after the other to miscarriage or other unfortunate events. And it really woke me up.
In my naivete, I always thought getting pregnant and having kids was the easiest thing in the world. And that once you get pregnant, the natural progression is that you carry it to term, and then once the kid is out, you raise them until they're old enough to take care of themselves. But God shook up that fantasy real quick.
As I was writing these words, I had an "A-ha!" moment.
Many years ago, a prophet when he was praying felt that God wanted to give me a verse:
In his heart a man plans his course, but the LORD determines his steps. Proverbs 16:9
At the time, I had no idea what this verse meant. I honestly didn't feel like it had anything to do with my life. If I were to be completely truthful, I think I even thought that the guy was probably just pulling some random verse from memory.
But as I look back over the years since I was given that verse, I realize that it has been a truly apt description of our lives.
And my a-ha moment that I described earlier is that I realized that Linda and my path to being parents has been exactly this!
We thought becoming parents would be as simple as getting pregnant, taking care of Linda, making sure that she eats right. Prevent Linda from getting sick or injured. And 40 weeks later, out pops a baby. That was the plan, in my mind. But God decided to set us on a different path. First, with the miscarriage of our first child, and now with the early arrival of Alicia.
None of this was in our plans. But it was in God's plans. While all of this took us by surprise, he knew all about it.
Which I think in one sense might make someone less apt to trust God. I mean, if he knew that all of this was going to happen, why didn't he stop it? He could have easily kept our first baby alive. He could have easily allowed Alicia to stay in for another 3 months so that she'd be full-term.
The truth is, I have no answers. I don't know why God took away our first kid. I don't know why Alicia came early. But what I believe is that the blessings God has in store for us outweigh the pain that we've suffered. The Bible describes God as a good father. I have to believe that as a good father, God would never inflict pain upon us unless there was a greater purpose and blessing in the end. I mean even me in my flawed nature would never purposefully hurt Alicia for the sake of hurting her. Would I allow her to experience some pain for the greater good, though? Yes. If I believe that the pain would bring about a greater blessing in the end, then yes, I would allow her to go through pain and discomfort. Case in point, her two surgeries.
All of this to say, God has a plan. And I believe Alicia really has a special purpose on this Earth, otherwise she wouldn't be here.
I mean some of will remember, she died! She stopped breathing and her heart stopped for several minutes and she was revived. This has to mean that God sent her back.
But the thing I need to remember is that I don't know how long I will have Alicia with us. Doctors haven't given us the "prepare your heart, she's very unstable" spiel in a long time. So I believe she'll be with us for a while. Even still, I need to cherish each day we have with her. Because truth is all too soon she will grow up and will be off to college and then not too long after that might even start her own family.
So while I do wish that time would speed up so that we could get her home sooner, I do need to remember that each day is precious. And being able to witness her growth and development is an amazing opportunity to cherish. =)
So for all of you parents out there, through all the screaming and wailing, nasty diaper changes, sleepless nights, let's encourage each other not to lose sight of how precious these days with our young children truly are.
As for Alicia, she's doing well. She's at 1422 grams as of last weighing and is now eating 25 grams. She's quite the feisty little girl and apparently loves getting attention and being clean.
She loves baths, hates dirty diapers, and loves to be coddle and cooed over. Hmm... =) A princess in the making?
Definitely very thankful for the progress she's making. Right now the major thing, well, I guess it's always been the major thing, is to get her breathing on her own. She can do that pretty well right now for a few hours at a time, but then she starts getting really short of breath. But now that she's considered "full-term", (she's 37 weeks and 3 days today) it should only be a short time until she can start really breathing without any assistance. Definitely something to pray towards and look forward to.
Pray for her eyes. Doctors say that she's recovered pretty well from the surgery. Her ROP is still at a stage 3. Which is kind of severe, but the doctors don't seem to worry. It seems like from what we gathered, they believe that since Alicia had the surgery, the ROP will take care of itself as she gets older. Pray that that is true.
Pray for her peace. For some reason she keeps getting worked up and she keeps somehow scooting her body forward until her head ends up off her little "towel mattress." She doesn't seem to mind it too much that her head is hanging off the mattress, but we'd still prefer it if she stayed in her bed.
I'll keep you guys posted as I get more updates from Linda. =) Thanks for reading and following along!
This past weekend, I also got the chance to do Kangaroo Care for the first time.
It was fantastic. Although, not quite what I imagined it to be.
Saturday morning when we got to the NICU, Linda kept asking me, are you excited? Are you excited? I didn't know what to say. I wasn't not excited, but I wasn't jumping out of my skin. I think I didn't know what to think or what to expect. Kangaroo care has been something I've been anticipating since a few days after Alicia was born, and now it was finally time to do it, and I didn't now what to think.
We had our usual visit with Alicia, then we heard the announcement, "Dear Family Members, visiting hours are over, please come back tonight to see your children." That was the signal that what I'd been waiting for for so long was about to take place. Soon, the pink dividers starting floating over in our direction followed by the forest green recliner that parents sit in to hold their children. Once everything was set up, I unbuttoned my shirt, sat down and Alicia was placed in my arms. She wasn't too happy at first, because she had been napping comfortably in her incubator and suddenly she was being picked up and taken out into the cold air of the NICU. Unfortunately her Father was a little new at this whole Kangaroo care thing, so it took a little work before Alicia finally settled down.
As I sat in our pink chambers, I awkwardly placed Alicia on my chest. Not quite knowing how to hold her so she'd be comfortable, I kept trying to adjust her position, which for a floppy 2-month old newborn just got frustrating. Add onto the fact that her cannula kept getting tugged at and dislocated it took us several minutes for both of us to settle in and get comfortable. But when we finally did get comfortable, we were both out. And I couldn't tell you what happened for the latter half our our Kangarooing session, cause no sooner had we gotten settled then both Alicia and I fell asleep. According to Linda, we were both sound asleep for about 30-40 min. So much so that when it came time to put her back into the incubator she started screaming cause she did not like being jarred awake out of such a deep slumber.
I left the morning session a little bit disappointed because my performance-driven nature wanted to have a "perfect" kangarooing session, especially since it was something that I'd been anticipating for so long. Before yesterday morning, I had picture that I would lay down, Alicia would be on my chest, and she'd just drift off to sleep right away. But all I remembered from our session was Alicia writhing about trying to get comfortable. Thankfully, I have a loving wife who is quite knowledgable of my psyche and kind of gently reminded me that what writhing about was only about 15 minutes of the whole hour, and that I don't remember her sleeping soundly because I myself was also deeply asleep.
I got to do Kangaroo care again this morning. And thankfully, after yesterday's experience, I was more adept at getting her into a comfortable position, and within a few minutes we were out. Linda was amazed at father and daughter's ability to sleep with all the loud conversations and alarms going on about us. But we were both sound asleep.
Before this weekend people if you had asked me, "What's Kangaroo care?", I would have explained, it's getting to hold our baby against our body skin to skin. But after doing it two times over the past two days, I think a better description is getting to take an hour-long nap with my daughter skin to skin. =)
Before I did Kangaroo care the first time, I asked Linda, what's the difference between this and just holding her in our arms as we had done before. She said, "You'll see." And boy did I see. There's just something about that skin to skin contact that is so intimate and so precious. And getting to feel your daughter kind of nestling into a comfortable position and then falling into a deep sleep in your embrace gives you such a sense of contentment.
Here are some photos of me and my little girl:
Watching my daughter get bigger and bigger each and every day gives me such a sense of accomplishment. I mean, granted it's nothing that I have done. But it just feels right. We're finally starting to see in reality, the things that we only saw by faith in the beginning. Early on in this journey when Alicia was literally only skin and bones, I imagined her being all plump and rosy-cheeked and now being able to see that for real, brings me such joy.
So many of you are dying to, but have yet to meet Alicia. Today, as we were with her, I got excited thinking about how she's going to get to meet her many aunties and uncles soon and very soon. The great homecoming is upon us friends! Let's rejoice and celebrate!
This morning when we got to the NICU we found Alicia with her head half hanging out of her bed. We didn't need to look but half a second to know what probably happened. Alicia's gained a lot of strength lately, and she's gotten even more active than before. For some reason, she likes dig her feet into her bed, straighten her legs and raise her behind up in the air. Every time she does that she ends up scooting her body half an inch forward. Well, she does that enough and eventually her head will end up off the front edge of her bed. And that's exactly what happened this morning - twice!
What we saw when we arrived at the NICU with her head half off the bed, was actually the second time she'd made it that far forward. The other time she actually got her whole head off the bed. Unfortunately the "mattress" she's resting on is slightly raised so when she got herself pushed too forward her head fell forward and she hit the top of her head on the floor of her incubator. Poor girl. The nurse said that she started wailing when that happened. I would start wailing too.
Speaking of wailing, now that she's got the vent tube out, I finally got the chance to hear her cry. It's such a sweet cry and the nurse tells us her cries are getting stronger. That's good . . . right? =) I have to say though, gone are the days of quiet Alicia resting quietly in her bed. She is quite feisty and active. She fights her ventilator, she pulls at her feeding tube, and I already told you about the scooting. Man, she's getting to be a handful. =) Which is actually a great thing. It means she's getting bigger and stronger.
About a month ago, I gave the nurses a book so that they could stamp Alicia's foot and hands once a week so we can have a record of her growth. Well, the cute nurses decided to turn that book into a little "journal" "progress report". When I opened the book this morning we saw two notes left by the nurses.
In one note, the nurse told about how Alicia's switched over to the nose cannula, but she doesn't seem to like it any better than the endo tube. The nurse says that Alicia has already broken a few cannulas in half already in her efforts to get it out of her nose. She's also pulled out her feeding tube. Man. Watch out. This girl is a fighter. =)
In another note, the nurse, Ting Ting, told us about Alicia's poopsplosion. Some of you may have already read about this on my Facebook Wall. But apparently Alicia has some powerful bowel movements. Quite a few times over the past weeks the nurses will come over to us and report on Alicia's . . . "activities." They'll tell us, "Mom and Dad, Alicia pooped on me today!" or "Mom and Dad, Alicia can really poop!" Well, one morning this past week, I called the NICU and the first thing the nurse told me was, "Dad! This morning when I was changing her diaper, Alicia pooped all over me and all over her incubator!" I just had to laugh. This morning in Alicia's diary, the nurse gave a full report of the incident. Apparently the poop got all over the incubator, leaked onto some of the wires, and all over the nurses hand. And it filled the NICU with the wonderful fragrance of sour milk. Haha. I laughed out loud as Linda read me what the nurse wrote, especially at the part when the nurse asked Linda, "Mommy, what are you eating?" Haha.
Our little girl. Getting so big. =) The amazing thing is that while she is getting quite plump, she's still quite light. But that's OK. She's picking up weight steadily. =) She's up to 1380 grams today. That's about 3.04 pounds! She's doubled her birthweight and more. And thankfully because of all the weight gain, she's getting stronger and breathing better and better.
Last week, I told you all that she got switched from the endo tube to the nasal cannula. Today when we arrived at the NICU we saw that they had switched her over to a thinner nasal cannula. The original cannula was bigger and still gave Alicia some pressure as she inhaled. This would help to keep her lungs inflated. The thinner cannula only provides a steady stream of air. There is no extra pressure to push the air into her body, so she's got to breathe all on her own. They haven't permanently switched Alicia over to this smaller cannula yet. But they do let her try for a few hours every day. It's a way to train her and help her to get used to breathing more and more on her own. Progress friends. Progress.
Also, this past weekend there was some things that I had to adjust to. Previously during my visits with Alicia, I got used to needing to check the monitors every few minutes to see if her blood oxygen levels were up to par. Well, when I first got back this weekend, I kept checking the monitors, but really there was nothing to check. Alicia's now breathing so steadily that her blood oxygen levels stayed consistently at 100%. Every once in awhile when she got tense it would drop to about high 80s, but then it'd go right back up. While it felt weird to not have to check the monitors every 5 seconds, it also brought me a lot of joy to see how well she's doing. =)
Keep praying friends! Alicia's really getting bigger and stronger! =) And it's really good to see. She'll be home in no time, I believe it.
Pray that she'll continue to take in enough calories so that she can keep growing. Pray that she can continue to breathe better and better. Pray that she'll rest when she can and not be overly active or anxious. Pray that she'll stop fighting the cannula and just focus on breathing so she can get the cannulas permanently removed. Pray for her muscle development and motor skills. Doctors say that she still has the gaps along her motor cortex, so they fear that she may have some muscle development problems. But they've got a physical therapist coming in to check on her every once in awhile to keep up with her progress. So far the PT says that Alicia is OK. She does have some stiffness in the muscles along the left side of her body. But they believe with some therapy it should be OK. But pray that she will develop completely healthily and normally. Her eyes have recovered well after surgery. She's still got some abnormal growth, but the doctor believes that as long as they don't get worse, they'll disappear on their own as she gets older. We pray for that. =)
Thanks for your prayers friends. I believe we've gotten over a huge hump in Alicia's development and I definitely believe Alicia will be home with us sooner rather than later.
Just got off the phone with the NICU and she's doing great!
She's been off the endo tube for two days now and continues to breathe really well! The nurse just told me that as long as she's not squirming about she's pretty much able to sustain her oxygen levels all on her own. Problem she's gained a lot of strength over the weeks and so sometimes she'll pull the nose cannula out of her nose. Fiesty little girl. =) Thankfully, her pulling the nasal cannula out isn't as bad as her pulling the endo out. And the nurse said that even when she does pull the cannula out, she's still able to breathe well. On occasion when she is moving about her oxygen levels drop, but even then they only drop to about 80% and she's usually able to get herself right back on track. I'm thinking it's similar to when we're stretching, most of us kind of hold our breath a little bit and we come right back.
She's back up to 1302 grams today. So she's gaining weight too. I'm so thankful. And I can't wait to get back to seeing her this weekend, cause have you seen the cheeks on her? Oh, my gosh, I can barely recognize her she's so big. Here's a picture for those of you who haven't seen.
It really does the heart good to hear that Alicia's growing and getting more and more steady.
Another piece of great news is that Linda is going to start doing Kangaroo Care today! This is huge! For those of you who don't know, Kangaroo Care is a special kind of therapy that doctors recommend for young children. Kids are held skin to skin on the parent's chest with a towel or blanket placed over them to help them stay warm. Our hospital is very conservative when it comes to Kangaroo Care. They only allow parents to do Kangaroo Care after kids are off the vent, breathing on their own and stable. So the fact that they're letting Linda do Kangaroo Care is a sign that she's doing well!
Pray with us for more and more of this steady growth and increase.
I was telling a few friends yesterday that I'm starting to see the finish line. In my spirit, I feel like we're over the hump and on the home stretch. Of course, there still isn't a set date for going home yet. But I believe if all continues improve as they have been the past few days, then we'll be upstairs in the step-down unit before long. And then next step is home! =)
This means we need to start prepping the house and getting everything ready. We also need to prepare ourselves because soon and very soon Alicia will solely be in our care. Scary. But it'll be OK, God is with us. =)
Another milestone has been reached. Another day of rejoicing. Another step to Alicia coming home.
As I mentioned in my previous post, the nurses told us yesterday that since Alicia needed to have her tubes changed today, they would try switching her over to a nasal cannula and see how well she does breathing on her own. And well, at 1:30 this afternoon her endotracheal tube or as the nurses call it, her "endo" was taken out and she was switched to the nasal cannula and she did really well! =)
Both Linda and I are relieved and elated and I'm sure Alicia is much much happier. Over the past few weeks she's grown steadily more and more fed up with having the tube down her throat and I think last night she about had it.
The nurses told Linda this morning that apparently Alicia didn't sleep at all last night. The night nurse said that Alicia pretty much writhed and squirmed about all night like a kid in a straight-jacket. Which would probably explain why she lost 12 grams today.
The funny thing is Linda reminded me that our friend Fanny's son, the one who arrived on the same night as Alicia, was also writhing about a lot right before he got his tubes switched. I wonder if at some point, these kids' brains just kick in and they just realize that they really don't want this thing down their throat and that they really can breathe on their own. And they just want the darn thing out.
I mean seriously, I know I talked about it a bit yesterday, but I'd never seen Alicia like that. By the pain and frustration she was showing in her face, if she was capable of vocalizing any sounds yesterday, I'm sure we would have heard some ear piercing screaming and wailing. She was that uncomfortable. And that's saying something because up until yesterday, Alicia has been the epitome of calm. Well, I mean she's had a few moments, but never like yesterday.
Anyway, that's all over and done and behind us. Thank, God. So to hear the nurses tell it, Alicia was quite still and statuesque as they were removing the tube as if she didn't want to do anything that would jeopardize the procedure and land her back on the tube. She's one smart girl. We told her before we left last night that they would be performing the procedure today. We told her to be brave and that she was going to do great. We encouraged her to just do her best and breathe on her own. If it was still too hard for her, we told her, it would be OK. We could just try again in a few days. But that she should do her best and Daddy God would help her. Well, our sweet girl did it. The nurses told us that when they switched Alicia over, they could tell she was trying really hard to breathe and to show that she could do it. And now she's doing really well! Praise Daddy God.
With the nasal cannula, Alicia will have to breathe on her own. The cannula is still connected to the vent so she's still getting some assistance, but the machine is no longer doing the breathing for her. If she can keep going the way that she's been going, we'll be upstairs in the step-down unit before we know it. And then next step will be home! Hallelujah.
One thing to pray about is that Alicia's lungs will stay inflated. That's one of the challenges of having a nasal cannula versus an endo. The endo's air was delivered right into her lungs so that it helped to keep her lungs from collapsing. In a kid her size an age, a collapsed lung can be fatal. Nurses say they will need to monitor her mucus more discreetly and will need to do suctioning more regularly to keep her airways clear. Pray and thank God for the work that he has done and is doing in this area.
Thanks for praying friends. I know we have an army of you behind us, which is why Alicia has been doing so well, and Linda and I have been doing relatively well emotionally! Your prayers, love and support have meant the world to us. We are so thankful that God has rallied all of you together to fight for us and with us.
Today was quite an eventful day in the NICU. It began with us learning that Alicia had broken the 1300 grams mark. Well, I guess technically she didn't break it since she was precisely 1300 grams (2.87 pounds) today. But that's OK. It's only a matter of time. She's getting up there in weight, and she's definitely getting stronger. Also, great news is, she's no longer the smallest kiddie in the NICU.
Today while sitting with Alicia, I looked over at the kid in the next incubator and commented to Linda about how he seemed smaller than Alicia. Linda looked at me like, "uh, duh" remember he's 900 grams. Oh, right. I knew that about the boy next door, but somehow it didn't compute that 900 is less that 1300. Haha.
We got some good news today and also some hopeful news today.
First, the good news. For the past few days, we've been able to have some cuddle time with Alicia for nearly an hour every morning. Today the nurse asked us if we would want to just schedule time everyday from 11:00-12:00 to hold Alicia. That way we could make sure to have the comfortable recliner chair set aside for us. We told the nurse, "Well, we need to think about it, and we'll get back to you tomorrow." Just kidding! Of course, we jumped at the chance. So this means that barring any unforseen circumstance, from now on, we'll get to hold Alicia for at least one hour every morning! Talk about improvement. =)
The hopeful news is that Alicia is scheduled to have her vent tube replaced tomorrow. They usually replace the tube about once a month. Since her vent settings have been pretty low, and she's done relatively well with the CPAP trials, the nurses said that they may not replace the tube at all and switch her over to a nasal cannula. Please pray that this can happen. It all depends on how well Alicia breathes today and tomorrow. If she's breathing pretty steadily without too much difficulty, then they can go ahead an switch her over. This will be great in two ways. First, this is a sign that she's maturing and getting stronger, which means that it's another step closer to bringing her home. Second, it can save her from being reintubated. Any time they need to stick something down her throat, it can be dangerous. And Alicia is definitely becoming more and more aware of discomfort and pain.
Today, after holding her for nearly an hour, she started to develop mucus again and was having trouble breathing, so the nurse put her back into her incubator so she could do some suctioning. Alicia was not a happy camper. I don't know if it was the shock of being taken out of my arms, even though the nurse and I were quite gentle about the transition, or that she was just not comfortable today, but during the suctioning Alicia was really feisty and fussy! She was writhing about and flailing her arms like she was going through the worst torture ever. Through the whole process we tried to calm her down by telling her that it was going to be all right, and that the nurse was trying to help her feel better. Despite our efforts, Alicia continued to flail about and at certain points her heartrate got up to over 200 bpm.
While the nurse was suctioning and Alicia, I felt like Linda and I were taking turns dealing with the alarms that were going off. One second, her oxygen levels dropped, so the alarms went off. Once we turned off that alarm, the vent alarm went off, because the nurse had disconnected it to so she could suction. Once we dealt with that alarm, another alarm went off signaling her heartrate was going to fast.
After it was all over, Alicia was still pretty agitated and it took Linda and I quite a few minutes to get her to settle back down. Thankfully, Mommy was able to calm her down enough that she could rest. Our little girl is definitely getting bigger and stronger and more aware.
One other thing that we learned today was that Alicia likes to sleep on her side or her stomach. She doesn't really like sleeping on her back. I mean we kind of knew this before, but today while I was holding her, it became really obvious. When she was first handed to me, I cradled her facing up in my arms. After a few minutes, she started getting uncomfortable and her oxygen levels started to waver. After a few dips, I adjusted her body so she was facing me, and she seemed to do better, so we asked the nurse if she could help us adjust her position. The nurse came over and helped her to lay flat on my chest, and she seemed to really like that. Almost immediately her oxygen levels started to rise. Unfortunately after a few minutes her oxygen started to drop again because of mucus buildup so that's when our cuddle session ended.
It's OK. There will be more and more cuddling in the future for sure. =) We can enjoy more bonding time as she grows older.
Please continue to pray for Alicia's development. Pray for the breathing to get stronger and stronger. Pray that she will put on weight. Pray for the healing of her eyes after surgery. And pray for her muscular development.
Pray for Linda and I, we're starting to get a bit physically worn out. Pray that we can get ample rest during the night and during the day so that we can have the strength and energy to keep going. This physical tiredness I'm sure, is common for all parents of newborns. =) So I definitely know we're in good company on this. =)
Speaking of newborns, congrats to our good friends Rachel Sawatzky and Beth Wei who both delivered healthy babies within two days of each other. Benjamin Aaron Sawatzky was born on August 10. And Scarlett Virginia Wei was born on August 12. Both these kiddies will be Alicia's playmates and potential future classmates as they grow up. =) So thrilled to celebrate these new lives with their parents and families and I'm excited to have the opportunity to raise our children together with both of these wonderful families.
Thanks for keeping up with us friends. Sending you lots of love and hugs.
I don't know if it's my trickster nature or because I like seeing the expression on her face, I really enjoy surprising my wife from time to time.
Earlier this week, I decided that I was going to take Friday off and go down early to see Linda and Alicia. So on Monday, I wrote and asked my boss if it would be all right with her if I took the day off on Friday. She being the sweet person that she is, gave me the go-ahead.
Now I could have easily called Linda and told her that I was coming down early this week to see them. But I decided that it might be fun to just show up and see how she reacted. From experience, I've learned that for a surprise to go off, it takes a lot of forethought and planning. So all week whenever I spoke to Linda, I just acted as if I wouldn't see her until our usually scheduled Friday night.
When Thursday rolled around, I was pretty excited. All day at work, I kept thinking about how I was going to see my girls by the end of the day. I wanted to post on Facebook that I was thrilled about being able to be with my girls that night, but I didn't want to ruin the surprise. Finally, at 5:00 I shut down my computer, left the office building and caught a bus to the train station.
On my way to the train, I decided to give Linda a call to throw her off my scent. During our conversation she asked me, where I was. It took me a second to think of an answer that wouldn't give me away, but eventually I just said, "I'm on my way home." That was sort of true. Just not the home she was thinking of.
After talking to Linda, I decided to turn off my cell phone in case she called again. I wouldn't want her to call while I was on the train and for her to hear something like a train announcement that would give me away.
It took me quite sometime to get to the hospital, and by the time I got there, visiting hours were nearly over. So I headed upstairs to the NICU, went through the usual ritual and strode into the NICU. Linda was sitting by Alicia's incubator with her back to the door. Perfect. I walked up behind her and stroked her back. Linda jumped a bit wondering who in the world in the NICU would touch her back like that. When she turned around, you should have seen her face. It was a mix of confusion, joy, perplexion and excitement. Our friends in the NICU also noticed that I had shown up unexpectedly, and immediately the questions began to fly. "Baba, why are you here? When did you come? Don't you need to work tomorrow? How did you get here? Did you come from the train station?" I answered the questions as I settled into the chair in front of Alicia's incubator and greeted her. I then told Linda of my plot to surprise her, and she just laughed. By now she's used to my random surprises.
I mean she was definitely surprised by me suddenly showing up at the NICU when I wasn't due to arrive for another 24 hours. But she wasn't surprised by the fact that I surprised her. =)
It was good to see Alicia. She had definitely gotten bigger since the last time I saw her. Her cheeks were fuller and she had more meat on her bones. Unfortunately, her eyes were covered to protect them and let them heal after the laser procedure.
Thanks for praying for her before, during and after her procedure. She's recovering really well. One concern was that her breathing might regress after the surgery, but praise God, Alicia got right back on track after the anesthesia wore off. She's breathing just as well as, if not better than before she had the laser treatment.
Right now most of the time she's breathing air with 21% oxygen saturation (same as room air) and even when she does need help, which is rarer and rarer, she doesn't often need air that's more than 30% oxygen. In fact, the other night, while Linda was Alicia, she noticed that Alicia's blood oxygen levels were up to 100%. Usually, the nurses aim for about 86%-95%, so Linda asked if the nurse could turn down Alicia's oxygen levels. What Linda didn't realize was that Alicia was already at the lowest vent setting, so the nurse couldn't turn down the oxygen even if she wanted to. How's that for progress?
Because she's been doing well, the doctors have started Alicia on CPAP trials. This is when they set the vent to push a constant flow of air into Alicia's lungs. This helps to keep Alicia's lungs inflated, then it's up to Alicia to do the inhaling and exhaling on her own. For the past few days, they've let Alicia practice like this for about 20 minutes during each shift. The goal is to lengthen the time she spends on this setting, until eventually she can handle inhaling and exhaling on her own without any help from the ventilator. Pray with us that Alicia will get stronger and stronger and better and better at this.
One thing that will help Alicia be able to breathe better is if she can get bigger. The doctors have mentioned a couple of times over the past couple of weeks that they're concerned that Alicia isn't gaining enough weight. One possible reason they're suspecting is that Alicia's heart has been beating faster than normal the past few days, especially today. Today, her heart rate got up to about 200 bpm a few times. Her normal resting heart rate is usually somewhere between 150 or 160 bpm. Doctors suspect that her heart may be working extra hard because she may be a little anemic (low red blood cell count). So they decided to give her another blood transfusion to help her. They'll see if this will calm her heart down.
As hard as it is to see our little girl pricked with another IV, we are thankful that this may be able to help her to lower her heartrate, and in turn help her to save some calories for growing instead of keeping her heart going.
Thankfully, Alicia is still growing. She's up to 1256 grams today, up from 1224 grams yesterday. Who knows where she'll be tomorrow! Maybe breatk 1300 grams? That would be a great miracle.
Keep praying friends! We're getting there. We'll have our little girl home with us before we know it.
Yesterday was August 8 - Chinese Father's Day - Baba Jie as they call it here in Taiwan. Since this Father's Day is a bigger deal here in Taiwan than the American Father's Day in June, yesterday was the first real time I celebrated being a Father. And being in my nature, I did some reflection on this journey of Fatherhood thus far.
You know, whenever one pictures a father, at least in my mind, I think of someone who is strong. Fathers to me, at least the good ones, are larger than life. They are stronger than giants. They are the pillars of their families, the problem solvers. They are the ones that teach their children and train them up. They are the protectors of their families.
And perhaps it's because of this mental image that I haven't fully embraced my role as a father. Yesterday, morning, during morning chapel at work, they asked all the fathers to stand up so they could honor us. And for some reason, I hesitated. I mean, I know in my mind that I am a father. And I know I love my daughter and that I am doing my best to be the best father that I can be for her. But part of me also felt like an impostor.
Maybe this stems from my life as an actor, but I'm constantly aware of real vs. counterfeit. I'm constantly on the lookout for people or things that are pretending to be something vs. genuine artifacts. And for some reason, there's part of me that still just feels like I'm "playing house."
I think a huge part of it is that as a father, I am powerless to impact the overall physical well-being of my daughter. Thus far in the role of Alicia's parents, Linda and I have had to make numerous decisions about things in which there really are no decisions to be made. What do I mean?
Take for example, Alicia's PDA litigation procedure. Out of protocol, the doctors and surgeons needed to talk to us and get our permission in order to perform the surgery. So in essence we had the option of saying no. But are we really going to deny our daughter an operation that may save her life? Of course not! So was there ever really a choice? Not really.
And I guess you might say that this is where I can take ownership of the role of Alicia's father, and it's true. No one besides Linda and I could have made that decision for Alicia and signed off on the surgery. We had authority, we had power. But again, all the power in the world feels like nothing when there's really only one possible choice you can make or one answer you can give.
So back to my "ideal" picture of a father. I think my struggle comes in that I can't play the typical role of a father. My daughter's physical well-being, her day to day physical needs are not in my hands. I mean clearly, I'm not around, and she's still alive. Other people feed her, other people change her diapers, other people monitor her oxygen intake levels. It almost feels like I've been usurped.
But even as I write this, the inner dialog begins.
First off, Campbell, those things - the diaper changes, the late night feedings, the baths, the need to protect and watch out for her- will come soon enough. Why not enjoy this time while someone else is taking care of her. Appreciate the "cheap childcare" while you have it. =)
Second off, your daughter's well-being is so much more than just having her physical day-to-day needs met. You fulfill a role in her life that no one else can. She knows you. Her spirit knows when you're around and your presence brings security and steadiness to her. You being there to hold her both when she's in and out of the incubator is just as important to her physical and spiritual healing as anything the doctors can do for her. Maybe even more important, because what the doctors and nurses do is temporary but your role will impact her for a lifetime.
Now before you call the psych ward on me cause I'm talking to myself about myself, I need to explain something. I firmly believe part if not all of these words come from God's Holy Spirit residing in me. (If you don't understand what this means, I'll get into it another time.) And also, I know that these things are things that many of you would say to me as well. And I receive them. Thank you.
Truth is, yes, in some ways Linda and my hands are bound. There really is not much that we can do to help our Alicia to get better faster and quicker. But the little that we can do, I believe makes a huge impact on the well-being of our little girl. A lot of it may be unseen or is hard to measure, but it doesn't mean that it doesn't exist.
So this goes out to other parents out there or any of you who are in similar situations. You feel like you only have a tiny bit to offer. And sometimes you might feel like what you can offer can barely make a difference or a dent in the great need of someone's life. God just reminded me that he often chooses the foolish things of the world to shame the wise; and the weak things of the world to shame the strong. He can take a little boy's lunch of five loaves and two fish and multiply it to feed a crowd of more than five thousand men, women and children. He can use a small shepherd boy to defeat a great big giant with a single stone. He can take a handful of flour and the last tiny bit of oil a widow has and multiply it so that every day she has enough to feed herself, her son, and one of his prophets.
So for all the unsung heroes out there, I salute you. For those of you who are shy or afraid because you feel like you have very little to offer please don't give up, give what you can and see what God can do.
And we'll promise to continue to do the same. We will continue to love Alicia in every way that we can.
Here's a song God used this morning to encourage me:
Phil Stacey - You're Not Shaken I am sinking in the river that is raging
I am drowning
Will I ever, rise to breathe again
I wanna know why
I just wanna understand
Will I ever know why?
How could this be from Your hand?
/Chorus/
When every little thing that I have dreamed would be just slips away like water through my hands
And when it seems the walls of my beliefs are crashing down like they’re all made of sand
I won’t, let go of You now
because I know, oh, You’re not shaken
I am trembling in the darkness of my own fear
All the questions with no answers
So grip me while I’m here
And I may never know why
Oh I may not understand
But I will lift up my eyes,
and trust this is Your plan
When I am in the valley
of the shadow of death
You’re not shaken
You’re not shaken
No matter what is going on, God is not shaken!
This was a great reminder for me this morning as I steeled my heart for Alicia's second surgery.
Last week, we were informed that Alicia's ROP (eye condition) has progressed to stage 3 and the ophthalmologist recommended laser treatment. Yesterday, we got confirmation that the surgery would happen today.
Surgery was scheduled for 3:00. So I called Linda around 3:00 and she had just gotten to the hospital and was on her way to sign the consent forms for the procedure. By 3:30 I figured our little girl's laser treatment was well underway. So I went through the rest of my workday half focused on work, half wondering how my little girl was doing. Linda told me that the entire procedure including anesthesia and the laser treatment would be about two hours in total. But around 5:00 when I got off of work, Linda was still sitting outside the operating room waiting. The computer screen outside the OR still showed Alicia's status as "Undergoing Procedure." An hour later, I didn't hear back from Linda, so I called, and Linda was still sitting out there, with no news of Alicia.
By now, I was more worried about Linda than Alicia. Linda had been sitting outside the OR for nearly three hours now without moving, for fear of being too far away in case they needed her for one reason or another. She hadn't eaten, she hadn't pumped, she hadn't even gone to the bathroom. Man, my heart ached to be with her to help relieve some of the burden. But that's a mother's heart, you know? It doesn't matter what your needs are, your child comes first.
Well, by 6:45, there was still no news, so Linda decided she couldn't wait any longer. She went back to the NICU and asked if she could pump in one of their side rooms. The doctors and nurses graciously accommodated her and let her pump. Finally, around 7:15 I got a call from Linda. While Linda was in the room pumping, Alicia got out surgery and was returned back to her usual spot in the NICU.
The NICU doctors said that the procedure went really smoothly. Linda tried to ask more questions, but the doctors didn't have any answers. They just kept saying, the ophthalmologist said it went well. The nonchalance of these doctors still baffles me to this day. These complex surgeries seem for them as routine as say, brushing your teeth. They act as if shooting a laser into a child's eyes who's barely over two pounds was any normal every day event. I guess truth is for them it is? These kinds of procedures are probably standard procedure for them. They do a few every day. So to them it's no big deal. I'm realizing that this casual way they have of talking, while unnerving is also a bit comforting. I guess you wouldn't want a doctor coming out all sweaty and frayed at the nerves as if that were the most traumatic thing they'd ever had to encounter.
So now Alicia is under recovery. A few things to pray for:
1. Last night in preparation for surgery they inserted an IV into her hand, for some reason her hand started to swell so they moved the IV to her foot. By the end of surgery her foot was also starting to swell. As of a few hours ago, they removed the IV and elevated Alicia's legs to relieve the swelling. Pray that the swelling would go down. Doctors say that it's most likely caused by bad circulation due to her small size.
2. She didn't get to eat all day today in preparation for surgery. So she's probably pretty hungry. As of an hour ago, they started feeding her again. They gave her 10cc, half of what she was drinking before. If she can take that well, and she's still hungry, they'll give her more throughout the night.
3. Pray for her recovery. Some children respond well to this kind of procedure and they're fine after a few hours. Others take a bit longer to regain their strength and continue their course of growing that they were on prior to the procedure. We pray that Alicia will bounce back quickly.
4. Pray for her to rest well. Linda said that she was a bit uncomfortable tonight after the surgery. It's understandable, after my own laser eye surgery, I was uncomfortable for about 24 hours. The eyes just kind of sting and throb a bit. Pray that Alicia would be able to settle down and that her eyes would heal quickly.
5. Pray that after this surgery her eyes would be restored to the way they should be if she were a full-term child. Alicia's eyes will need to be covered for the remainder of her time at the hospital. This is to protect her from any further damage. Pray that her eyes would stay healthy, that the blood vessels would grow the way they should grow and that she would have perfect vision or better.
6. Doctors have confirmed that Alicia does indeed have some damage along the right side of her brain in the area that controls motor skills. The good news is that as of now they haven't seen any problems in terms of muscle development for Alicia, meaning that her muscles aren't uncharacteristically stiff and that she's still able to move her limbs pretty well. So we pray that God would continue to strengthen Alicia's motor skills. Doctors will continue to followup on this area of her development and if they notice anything out of whack, they'll contact a Physical Therapist right away to correct the problem.
7. One of the doctors told us that they did an X-ray of Alicia's lungs and their condition is not ideal. From what I gathered from the doctors, the anesthesia from the surgery actually caused some liquid retention in Alicia's lungs. Also, because Alicia is not able to breathe on her own yet, they had to use higher vent settings during the surgery all of which is not very good for her already damaged lungs. Add on the fact that she already has a lot of mucus in her lungs her breathing right now is a bit labored. Oh, and also her anesthesia hasn't completely regressed so her breathing isn't completely stable. I just called and asked the doctor about her situation, and asked about how long she estimates this condition to remain. She said that it depends on the child. Some kids can recover from the anesthesia right away and go right back to breathing the way they were before the procedure. Other kids take up to a week. We pray for Alicia to recover quickly. However, the good news is that Alicia's vent settings as of now aren't that much higher than what they were at before the procedure, so in faith, we take that as a sign that she'll get right back on track.
8. Pray for Linda. It was an exhausting ordeal for her and I wasn't able to be there to help share the burden. I've said it before and I'll say it again my wife is an amazing woman. God knew what he was doing when he decided to give Alicia Linda as a mother. Linda said that Alicia was writhing about a bit this evening during visiting hours. She was waving her arms around, but once Linda took her hand, Alicia grabbed on and settled right down. Ah, the calming presence of a mother. I'm really thankful that Linda could be there to comfort our little girl.
Seriously, I still can't figure why God is having us go through all of this. All I know is that he has a beautiful plan in place. It's definitely not easy, but as he told me today while I was anxious about Alicia, "Just leave it to me, I've got it."
OK. God, you've got it. And there are no better hands to leave Alicia in. Besides, she's your kid, not ours. We're merely the foster parents that you've allowed to have the privilege of taking care of her. You obviously want her here. Her heart stopped and she wasn't breathing after she was born. You revived her and sent her back here to Earth. You have your purposes. And if you say you've got it, then you've got it. Her life is in your hands.
I'm not going to lie. The past few days have been a struggle. I've been wading through a muddle of emotions and thoughts, some positive, most burdensome. Thankfully, the Lord in his ever tender ways is always by my side and has been helping me through.
In trying to think of how to convey what I've been experiencing, the thought occurred to me to do it through song. About a year ago, Linda and I hosted a weekly radio program in which we played music and shared personal stories from our lives. It was an extension of the current ministry we're working with.
Anyway, since music often can convey a lot, I thought I'd take you through a musical journey of my heart. Hence the title of the post. =)
First off, an oldie but goodie.
I mentioned that my emotions have been pretty complex lately, and well, I feel like this song expresses a lot of what I'm going through.
While I am so thankful for everything that the Lord has brought us through, I definitely, definitely have days when I long for the simpler days of yesterday. The days before Alicia came along, the days before we had to deal with ventilators, ROPs, BPDs and doctors. The days when both Linda and I were working and we had a rather comfortable lifestyle. The days when our main concern was what to make for dinner that evening, or what to eat for lunch. The days, as the song says, when I didn't feel like half the man I used to be.
The trouble is, that as soon as I have these thoughts, I immediately feel a twinge of guilt, because to go back to those days would mean that I'd have to go back to the days when Alicia didn't exist, when I didn't have this precious jewel in my life, and I definitely wouldn't want that. No matter how hard things are, I would never give Alicia up for anything. So you see where I'm torn.
Then came this morning. My heart was especially heavy as it always is at the end of a weekend since I've started working again. As much as I do enjoy working again, it's always so hard to leave Linda behind. Though I know, I'll see her again in a few short days, it's always heart-wrenching to leave. As much as I wish that it didn't hurt so much to leave, I'm glad that it is hard to leave, because it means there's a bond there. Linda's my best friend, when she's around I feel comfortable and secure. And now add Alicia into the mix, and it makes it that much harder to say goodbye. Made me think of this other song by BoysIIMen
Today, after our morning visit, I practically cried knowing that it would be a few more days before I saw my girls again. Thankfully through modern technology we can still stay in touch and I can keep up to date on all that's happening with my girls though I can't be physically present with them.
Some of you may feel like I'm a sap, but you know what? I don't care! I love my wife and I love my daughter and I don't care what anyone says about how hundreds of families have lives where the father/husband live in one state or country while the rest of the family live some place else. That's just NOT the way it's supposed to be! Fathers are not supposed to be GONE from the family picture. Don't tell me my daughter doesn't know the difference. She KNOWS! Her heart beats faster at the sound of my voice after not seeing me for a week. She knows! And let's say she doesn't know, MY WIFE KNOWS! My wife needs me and I need her. You show me a family where husband and wife live separately for years, and I bet you a large majority of them have some sort of relational problems, whether it be between husband and wife, or father and child, or both.
So yes, I will put up with this for the time being because that's what we have to do. But if this is more than one or two months, I'm sorry, but you will not see me living apart from my family. Too many families have absent fathers, and I will not be one of them. I am a firm believer that many of society's problems stem from this model of family life. No way, no how. Not for the Chang family. I'm sorry.
Anyway, off of the soap box now and back to the music.
So this morning, after leaving the hospital, my heart was pretty heavy. I pictured Linda who at that time was having her daily Alicia cradle time and I just felt miserable. I wanted so much to be there with them enjoying our family time. I wanted to pray but I had no words. I wanted to talk to someone, but I didn't know who to call. Everyone, I knew was either busy or wouldn't know how to handle my emotional state. So I just sat at the bus stop on my own.
It was at that moment that God spoke to my heart and told me to pull out my iPod and listen to some worship music, and just to worship. Half out of obedience, half out of desperation, I did. I pulled out my iPod, and chose a song.
After this song, the cloud over me started to lift.
There will be a day with no more tears
No more pain, and no more fears
There will be a day when the burdens of this place
Will be no more, we'll see Jesus face to face
But until that day, we'll hold on to you always
Oh, how I long for the day when I can see Jesus face to face. I was just telling Linda how I really wish and pray for the day when I can sit and talk with God face to face the way I sit and talk to Linda. How awesome would that be?
Then I heard this song by Chris Tomlin.
So often over the past year and half God has brought the image of the Eagle to mind over and over. Eagles use the power of storms to soar and fly high into the sky. And in Isaiah (a book of the Bible) it says: but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint.
It's true, as we continue to hope in the Lord, we find renewed strength, though we get tired, though we get wearisome of the journey, he gives us power to keep going.
I love these lyrics:
And I will rise when He calls my name
No more sorrow, no more pain
I will rise on eagles' wings
Before my God fall on my knees
And rise
I will rise
Fall on my knees and rise... Beautiful!
Next on my playlist came a song by Big Daddy Weave that pretty much expressed all I was struggling with, but then ended with some amazing truths.
I need to remember this
That it's when I'm at my weakest I can clearly see
He made the lame walk and the dumb talk
And He opened blinded eyes to see
That the sun rises on His time
Yet He knows our deepest desperate need
And the world waits while His heart aches
To realize the dream
I wonder what life would be like
If we let Jesus live through you and me
As if that weren't enough, next God had me listen to this
He is
He was
He always will be
Even when it feels like there is no one holding me
Be still, my soul
He is
So many times over the past few days, I felt alone. Yes, I had Linda, but she was in the same boat as me. I felt we were drifting in our own little sea. I mean truth is, many, many of you are praying for us every day and you love us and your messages bless us. But you all have your own lives as well. You don't have time to sit with us every day and hold us and coddle us. It's impossible. But this song was a huge encouragement, even when I feel like no one is holding us, not even God, in reality he is. He's right there.
And I love the lyrics, "Be still, my soul. He is." These are the very words that God has spoken to Linda and me over and over since even before all of this began. Be still. That doesn't mean to sit quietly and not move. Be still here means to let go. To let lie. To release. Such a hard thing to do. What if I let go, and there's no one to pick up the pieces?
Before I got home, there was one more song I heard. This one I felt like again was a direct cry from my heart.
Savior, please take my hand
I work so hard, I live so fast
This life begins, and then it ends
And I do the best that I can, but I don't know how long I'll last
I try to be so tough
But I'm just not strong enough
I can't do this alone, God I need You to hold on to me
I try to be good enough
But I'm nothing without Your love
Savior, please keep saving me
Savior, please help me stand
I fall so hard, I fade so fast
Will You begin right where I end
And be the God of all I am because You're all I have
Hallelujah
Everything You are to me
Is everything I'll ever need
And I am learning to believe
That I don't have to prove a thing
'Cause You're the one who's saving me
SOOOO true. I've been trying to be so tough. I've been trying to be good enough. But I've realized there's no way. I'm not strong enough. I can't do it alone. I fall hard, I fade fast. I have reached the end of myself.
Thankfully, he picks up right where I leave off. He catches the things I drop. He covers me, he saves me. And you know what, I don't have to prove a thing.
Amen? AMEN!
If you don't have time to listen to all these songs, don't worry. Just come back when you can. They're great songs, with great lyrics. And I hope that they will be an encouragement to all of you as they were to me today.
I'll be the first to confess that I am weak. Any of you who have been following the blog will know that this journey has been waring on us. We've grown a bit numb, and there are days when we just go through the motions to get through it. We do talk to God every day as we go through the day, but rare have been those times these days when we've sat down to have a good heart-to-heart with Him. For us, emotionally to sit down and spend any extended time with him, it's really hard. Sometimes I find that all I have strength for or desire to do is to just sit and watch TV. I try not to watch TV, but sometimes it just takes that much more effort to do anything else. And sometimes, we just really don't want to try.
I think the hardest thing is not knowing exactly how much longer Alicia will need to be in the hospital. If we had a date to look forward to, it might help us to be able to pluck up some courage and strength and press forward. But right now, it seems like an endless marathon. Anyone who has done any kind of endurance exercise knows that physical wall we all hit when our muscles are ready to give out, and we feel like we can't take another step or go another inch. From experience, I know that this wall is an illusion, and once you press through it, you begin to soar, because you find renewed strength. Well, right now, Linda and I have hit that wall in this journey. And the hard part is even if we would want to give up, we can't!
And usually, when you hit this physical wall in a marathon, you can encourage yourself by saying, "Come on, just a few more miles, just a few more feet, the end is in sight!" Yeah, well, we know the end is in sight, but is it a week from now, a month from now, two months from now? When? And not having markers that tell you how far you've come and how much farther you have to go, things can get pretty discouraging.
So right now we depend on prayers and God's strength. Let me tell you, we have no more empty words about God's strength and presence. I've spoken and proclaimed to many, many people over the years that God's strength and grace is enough for us no matter what we're facing in our lives. His presence is a comfort and he gives us peace in all circumstances. Yep. Time to test my faith. It's time to live out what I've been preaching. Do I really believe that God is always there? Can I continue to find the joy in all situations? On my own? No. But by God's grace and through your prayers, we can.
So let's keep walking together friends. We shall have victory soon and very soon.
Alicia keeps growing well. She grew 34 grams yesterday and is now up to 1146. We're hoping that the bigger she is the faster she'll grow. We hope her weight gain will be exponential and not gradual. She's still on the vent, but her oxygen saturation is pretty low. We just keep praying that she can start having the strength to breathe on her own. As I shared in my last post, the nurses have been really accommodating and have been letting us hold Alicia after our daily visits. And that's been a blessing. Today, since I had to go, Linda got to hold Alicia for nearly an hour. She said that that was bliss, and it was an amazing bonding experience being able to talk to her while she looked at her face to face, and then just to have Alicia sleep in her arms. Amazing.
Another thing you can pray about is that God would give me the strength, the resources and the wisdom to prepare our house for the grand homecoming. Because our house is close to the mountainside and Taiwan is very damp and humid, we have a lot of mold in our house. This is not only bad for my allergies, but also for preemies. A friend of ours was kind enough to give us an air purifier, and I've been running the dehumidifiers in our house, so things have cleared up a bit. But I'm thinking, I should probably get a second air purifier to really get things cleaned up. Also, I need to clear out some clothes, and other junk that we've accumulated over the years to make room for Alicia's things. Definitely a big project, but one I'm glad to do. =) If there are any volunteers, who enjoy cleaning and organizing, don't be shy! =)
Thanks for continuing to journey with us through all the ups and downs. =) I'm sorry if you're getting sick from the roller coaster of emotions, but just know that I appreciate each of you who read this blog, pray for us and encourage us, even if I don't always say so.
