Falling Out of Bed

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.

Praise the Lord!

Proud Kangaroos

My heart swells with pride for my daughter.

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. =)

Campbell

No More Endo!

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.

Alicia's Homecoming Celebration is imminent!

Feisty and Fussy

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.

Surprise!!

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.

Powerless Yet Powerful

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.

Music of the Heart

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.

Much love,
Campbell