Monday, November 12, 2012


Those that know me, know that for the most part, I'm a pretty cheery fellow, known for bouts of mischief. However, I have also been told at various times over the years that I can be pretty intimidating. Something about my face when I'm in a bad mood, or am pensive makes me look fierce and threatening. Well, you should have seen me tonight.

So today was day 4 of our hospital incarceration. Yes. I said incarceration. For that is how it feels being stuck in our tiled 1970s style hospital room. As far as we can tell, the reason the doctors haven't released us is because over the past few days, Alicia's temperature hasn't been stable and she's had a few fevers.

Well, Linda and I have been making the most of our little staycation at the hospital, and I have to admit that I have been enjoying the extra family time and the fact that Alicia has been especially cuddly since she's been ill.

But I digress, back to me being fierce and threatening.

So, for some reason, Alicia really doesn't like having her diaper changed. And over the past few days, she's been especially fussy when we lay her down to change her diaper and she especially struggles when we try to change her clothes, which is made even more complicated by the fact that her right arm has been attached to an IV.

So tonight before bed, we decided that we could change Alicia's clothes so she could be more comfortable. But that involved getting the nurse to detach her IV which is a process in and of itself. Well, our dear Alicia struggled her way through the IV detachment, and then struggled through us undressing her and dressing her again, so much so that her IV needle got dislodged. Causing blood to go back into the IV, and also around the IV.

Since we are in the hospital for at least one more day, the nurse said that she would probably need to change the IV, since this one was no good anymore. But just to be sure she would confirm with the doctor.

So she left our room. Ten minutes later, no news from her. Twenty minutes later, thirty minutes later still no news. Meanwhile, Alicia, has this syringe attached to her IV needle, dangling from her hand, which when she's not trying to eat it, ends up accidentally shoving it into my neck. So we're like, OK, what's going on? So we page the nurses station, and the nurse tells us through the monitor that the doctor is coming to change the IV, but that she's busy at the moment, and will be with us shortly.

We wait for I don't even know how long, but a long time. By now it's almost 11:00 and I want to put Alicia to bed. So finally, I decide that I am going to carry Alicia out to the nurses station and let them see her darling face, and in the kindest way possible ask them to please ask the doctor to hurry her butt up.

Well, we get out there, and the nurse sees us and says, "Wow, how did you guys know that the doctor just came up. We were just about to come get you."

All right, great. Let's get the show on the road.

So the nurse and the doctor direct us to a side room with a small examination table, and asked us to lay Alicia down.

Alicia, as I mentioned before, is very aware. As soon as I layed her down on the table, she started to cry and writhe about, probably fearing the worst.

It took three of us, Linda, a nurse and myself to hold Alicia still while the doctor examined her hand trying to find a vein to insert the new IV into. Linda and I did our best to calm Alicia down by singing to her, and it seemed to work for a bit, but the doctor was just taking FOREVER. She couldn't find a vein.

Eventually, she asked the nurse to get a light so she could shine it into Alicia's hand and so she could find a vein. Finally, after what seemed like an eternity, or a few minutes, depends on who's counting, the doctor found a vein that could possibly work.

Oh, you should have seen the thrashing that ensued. Oh, man. I thought giving Alicia medicine the sleep medicine was bad. Her crying and bucking only got worse as I watched with trepidation as the doctor gingerly inserted the needle into Alicia's hand. It was horrifying, Alicia cried out in pain and fought tooth and nail trying to get her arm free from the pain that I can only imagine she was experiencing. Finally, I saw the needle go in, and thinking the worse was over, I breathed slightly, only to notice that the doctor started to pull the needle out and then insert it again. In and out, in and out she went several times, all the while Alicia's crying her head off. Finally, I couldn't take it anymore when I could tell that the doctor was having trouble. I finally, said, "Can we please take a break? PLEASE!"

The doctor, seeing the strain in our eyes and knowing the stress that Alicia must have been going through, kindly agreed, and said, sure let's take a break.

I couldn't pick Alicia up and get out of that room soon enough. I was doing my best to calm Alicia down, while seething at what I viewed as complete incompetence on the part of the doctor. (For those of you in the medical field, you'll excuse my nasty comments at this point. I realize that the doctor is a very intelligent woman, and she's doing her best, but as a father, I am PISSED OFF.) I walked down the hall with Linda who at this point had taken Alicia into her arms to comfort her, and out of earshot of the doctor, I just started to mumble to Linda.

"Are you kidding me? What is she doing?! I mean, really? In and out and in and out with that needle. And don't you know that if you're working with an infant, that you cannot take your sweet time trying to find a vein?" I decided that if it was at all possible, that I would not let them do that to her again. So I went over to the doctor, and I asked her if we really, really needed to insert an IV? Couldn't we just use the old one?

She said that the old one was damaged, and therefore was no good, and that since we were going to be here for one more day, at least, that they needed to insert an IV for Alicia's sake. She also assured me that they had called another doctor who was more experienced to help with the insertion. So I relented, and said, all right, well, let's try again.

When Linda saw the new doctor she said, "Oh, this is the doctor who helped to take care of Alicia last year when she was in the Sick Baby Room. She's directly under our primary care pediatrician, so she's good." That put my heart at ease . . . until we got back into the examination room.

By now Alicia had calmed down and was nestling in my arms. But once again as soon as I lay her down on the table, she started crying. This time even harder than before, anticipating what was coming next. I literally had to hold Alicia down with force while once again the doctors searched for a vein. It was pure torture for both Alicia and for Linda and I. Finally she found a vein, and she inserted the needle, once again with lots of struggling and crying from Alicia. But as soon as she got the needle in, she shook her head, the vein had broken under the skin. No good. So out came the needle.

Linda at this point looked at the doctor and said half-jokingly, here, please take my arm, take my blood. I can't bare it anymore. The doctor looked at Linda and smiled with understanding.

They were going to try again, but I asked if I could please just hold Alicia and calm her down for a bit first. They agreed. So I took Alicia out of the room once again.

Once she was calm, we went back into the room to try again for the third time. The first two times, since Alicia's original IV was in her right hand, the doctors were trying to put the IV into her left hand, since they like to alternate hands. However, after seeing that her veins in her left hand were pretty thin, the new doctor decided to try to put it into her right hand again.

However, this would require the removal of the old IV. Oh, man, another battle, but thankfully, not as much as a struggle as the actual insertion of the IV.

Well, after the old IV was out, it was time to try to get a new IV in. And once again, the search for a usable vein began. Unable to find one in her hand, the doctor searched for one in her arm, finally they found a vein that could work, and so they began the prep work.

I'm sure I don't need to mention again that this whole time through the search, the prep, and everything that Linda, the nurse and I are doing the best we can to hold Alicia still, and to keep her from swinging her arms. Our little girl is a fighter, I tell you. She is STRONG. You should have seen the fight that she was putting up.

Seriously, I felt horrible willingly participate in the torture of my daughter. Well, finally the arm was prepped and the moment of truth was upon us. Before, she inserted the needle, I heard the doctor say, OK, this is the last try. So she inserted the needle, while I held my breath, and to my relief, I saw blood start to flow into the needle. She struck gold! Yahoo!

Wait, the doctor is shaking her head. Something's wrong. The vein burst again. ARE YOU KIDDING ME?! Now I know that it's in no way the doctor's fault. I'm sure that it was a combination of Alicia's delicate veins and also her thrashing about and using force that burst the vein. But my heart really sank. And I had it. I begged the doctors. I asked them if we could please, please not have to insert an IV.

They asked how she had been eating the past few days, and Linda and I were quick to say, she's been eating great. Really! And besides, her fever medicine and other meds have been administered orally, I reminded them.

After considering for a moment, the doctors were merciful, and said that we could just not insert an IV and see how she did tomorrow. I swept Alicia off of the table seething, and marched back to our room as quickly as I could.

I held Alicia in my arms, but she was still all wound up from the fight, and crying and crying. I felt angry, and sad, and really upset at what had just happened. Linda tried to take Alicia from me to comfort her, and I snapped and said, "I'm fine!" Sorry, honey. Linda just laughed and said, that she thinks her wanting to hold Alicia was more for her comfort than Alicia's. So I passed Alicia over to her, who calmed down right away. Linda really is Alicia's source of comfort for sure.

Alicia dug her head into her Mom's shoulder and just nuzzled her little face in for comfort. Every once in awhile, she'd peak up from her shoulder to see if I was still there, and I looked into her sad eyes feeling like my heart had been wrung out.

I was simmering with anger, and started pacing about trying to pack myself up to prepare to go home. All the while ranting and asking why in the world we were still in the hospital. I felt that what we had just gone through was completely unnecessary. Alicia really didn't seem that bad in my eyes. Why were we even there?

I mean in the end, I had to admit that with all that has happened, it is better for Alicia to be 100% better before we get discharged, but it was just hard!

As I said on Facebook, earlier, if I never have to see my child ever get pierced or pricked with a needle again it will be too soon.

Hoping that Linda and Alicia are resting peacefully now. Tomorrow is a new day. And I hope our LAST day in the hospital EVER!

Sunday, November 11, 2012

72 hours continued

OK... so here we go part 2 of the epic story. =D Don't you love my dramatic flair?

First, to answer the question that I'm sure many of you have on your minds? Is it Meningitis? ... Thankfully, no!

Here's how we got to that conclusion.

So last I left off, we all went to sleep exhausted after a long day of hospital visits.

The next morning, we all woke up after not really resting solidly throughout the night. The doctor came in to check in on Alicia around 9:00 and told us that he wants to schedule Alicia for a brain scan later that morning in order to rule out any abnormalities in brain function. This scan would be different from the sonogram in that it would measure brain waves and not just show a picture of her brain.

Also, knowing that the ophthalmologist had some concerns over Alicia's eyes, he also ordered a test done that would measure on a neurological level how well her eyes were transmitting signals to her visual receptors. Both tests would be done that day.

Now, what you just read, I hope seemed pretty coherent. Very different from my state when the doctor was talking to me. When the doctor, spoke I did NOT get all that information at all. All I knew was that she was going to get some sort of test done sometime during the day. In fact, I find that a lot of times when doctors speak, it's only in processing back the information that I really understand everything that they were saying to me.

Anyway, so back to the tests. Both of these tests involved putting Alicia to sleep, so about half an hour after the doctor left, a nurse came in and gave us a dosage of sleep medicine to give to Alicia orally. Simple enough, right? NOT.

This medicine apparently is really bitter and kids really dislike the taste of it. Linda has had a lot of experience with this medicine, since she had to on two prior occasions give Alicia the same medicine to put her to sleep for a couple of auditory tests done earlier in the year. Knowing Alicia's reaction to taking this medicine, it was with dread that we faced the task of feeding it to her.

Knowing that the medicine was really horrid tasting and that Alicia wouldn't like it, we asked the nurses if they had any kind of syrup or sugar to help the medicine go down. (Anyone humming Mary Poppins?) The nurse matter of factly told us no, they didn't, as if it wasn't their concern how we got the medicine down Alicia's throat.

Well, we took a deep breath, and decided to try our best. Oh, man, you should have seen Alicia's reaction as soon as she saw the medicine. We could barely get a drop in, so I told Linda to go downstairs to a coffee shop or somewhere to see if we could get some syrup. So she left, and I sat there with Alicia trying to figure out how to get this medicine into her.

That's when the nurse came in. She saw me struggling and asked me where Mom was. And I said she went to get some sugar. The nurse looked at me and said, "There's not enough time. The test is at 10:30 and it was already 10:00. We need her sound asleep for the test. Give me the medicine, I'll help you."

Oh, man, what happened next was a scene straight out of a horror movie. You should have seen Alicia kicking and screaming and thrashing about as I held her head and body still as the nurse dropped the medicine down her throat. Wow. You would have thought we were burning her alive, the way that Alicia was reacting. I felt like a horrible man for willingly participating in the "torture" of my daughter.

Well, as soon as we got the medicine down, in comes Linda with the syrup. Too late honey.

We thought we would maybe give Alicia some of the sugar to wash the taste out of her mouth. She would have none of it. We ended up dropping most of the sugar on our bed and just giving up on the endeavor.

Eventually, Alicia fell asleep in my arms, and it was time for us to bring her down for the test.

Oh, man. Another battle. Alicia is a very sensitive girl and quite aware of her surroundings. We brought her into the testing room, and as soon as we layed her down on the bed, she would awake and start crying. So we picked her up to calm her down and get her back to sleep. As soon as she was asleep, we would try again. Again, as soon as her body hit the bed, she had another crying fit.

The technician felt bad for Alicia, since her eyes were getting all red and swollen from all the crying, so she said, maybe we should just take Alicia back to our room, keep her awake, and then later on in the afternoon, we could bring her back when she was more sleepy.

So we picked Alicia up, pushed her IV stand and started walking back to our room. Half way back to our room, we realized that the medicine was really taking effect, and that no matter what we did, Alicia would NOT wake up, so we decided to go back and see if we could try again.

The technician was gracious and allowed us into the room again. Thinking she was fast asleep, we started to lay Alicia down, but once again, she woke up crying. Linda decided to see if her mother's touch could calm Alicia down enough to let her sleep. So she picked her up, rocked her back to sleep, and tried to lay her down. Again, to no avail.

Eventually, what we ended up doing was Linda rocked Alicia to sleep, and then as soon as she was asleep, Linda climbed onto the bed, and lay her down, and then lay on top of her until Alicia calmed down enough to fall asleep. Thankfully, after 30 min of battling with her, Alicia finally fell asleep enough to get the sensors on her head, and finish the test.

Forty-five minutes later, we were back in our room, and Alicia was out like a light on her bed.

We got to rest for a couple of hours, and then we were informed that it was time for Alicia's second test.

I won't go into all the details of the second test, but suffice it to say, we went through the whole ordeal again. At first, we thought we didn't need to give her another dose of the medicine, but as soon as we laid Alicia down on the bed, she woke up and this time she became wide awake. So we had to go through the process of feeding her the medicine, rocking her to sleep and then gingerly putting her down only to have her wake up again.

This time, we decided that when we put her down, we would just let her cry herself to sleep, which thankfully she did. At which point, Linda and I left the room and let the technician do her thing.

This time the test took about 20 minutes, and we were back in our room.

A few hours later, Alicia's doctor who is a specialist in pediatric brain development and neurology came and gave us the results of her test. He told us that there was nothing too abnormal with Alicia's brain function. Praise God. He said of course, because of the brain damage she suffered when she was born, her right brain was not firing at the same rate as her left brain. But he said that was to be expected. And at this point he said it wasn't anything too big to be concerned about.

He said that since all tests came back normal, his diagnosis was that Alicia had the spasms most likely due to the fever. He said that the first 72 hours after an instance of seizure is critical so he wanted us to say in the hospital to monitor Alicia's fever, and also to see if she would have another episode.

As for the eye exam, he explained to us that the test measured how quickly it would take for a signal to go from the eyes to the visual receptors in the back of the brain. He said that for Alicia her results were a few milliseconds off from normal, but that as she grew older this would be barely noticeable, and again nothing he's too concerned about right now.

So thankfully, our Alicia is doing well.

The past few days have been just a lot of resting and sleeping for her, and a lot of us fighting to get medicine down her throat.

But overall it's been a great time of rest, and for the family to be together. Definitely a lot of cuddle time for me and baby girl, which I am enjoying, despite the soreness and crampiness I get in my body after lying in bed for hours at a time.

Praying that Alicia can quickly get this virus out of her body, so that we can all go home and get some proper rest.

Pray with us that Alicia can get well quickly, and that she can go back to being her smiley cheerful self again soon.

Saturday, November 10, 2012

72 hours

It has been quite an eventful 72 hours in the Chang family. (I warn you ahead of time that this post might be a little on the long side, so take it in stride.)

It started Wednesday, when we noticed that Alicia was a bit fussier than normal. She wouldn't eat, wouldn't sleep and wouldn't let Linda put her down. At first we thought maybe she was just teething and therefore wasn't feeling well. But by that evening, right before we put her to bed, we realized that she was hotter than usual, and after taking her temperature, we discovered that she had developed a fever.

Somewhere along the line we had heard that belief that kids develop fevers when they're teething, so we thought maybe the fever was just a result of the new teeth coming in. (We found out later that kids do not get fevers when teeth come in.) So we went to bed.

In the morning, Alicia's temperature had gone down, so we thought we were in the clear. We went through our regular morning routine. I went to work, Linda stayed home and took care of Alicia. Around noon, Linda brought Alicia to the office to meet me for lunch, and that was the start of what would be the craziest two days we've had in a long time.

During lunch we noticed that Alicia really had no appetite, and she was more lethargic than usual. We thought maybe again, that she was just not feeling well because of her teeth. So we just let her nap while we ate lunch. After lunch, Linda needed to run an errand, so I took Alicia back with me to the office. While sitting at my desk, Alicia nestled into my chest and just kind of laid there, which is quite unusual for our little ball of energy. Usually when sitting with me, she's pushing herself away from me, trying to get a peak at what Daddy's doing on the computer, or trying to grab something on my desk. But not this time. This time she kind of just laid there in a stupor.

Suddenly, Alicia awoke with a start and started coughing and dry-heaving. Knowing what was coming next, I grabbed the garbage can and positioned her head over it. Thankfully, nothing came out, and she just settled back into my chest. A few minutes later, however, she did it again, this time, she did actually throw up, what I can only guess was her breakfast, since she hadn't eaten anything at lunch.

At that point, I noticed Linda had texted asking me how things were going, and I told her about what had just happened, and so said she was coming back right away.

As soon as Linda got back to the office, we packed our stuff, I shut down my computer, took care of some last minute office business, and we rushed off to the hospital with one of my co-workers who has been sort of a God-mother to Alicia over the past few months.

My co-worker has a son who had several medical conditions when he was younger, so she was on pretty familiar terms with the pediatricians at the hospital that Alicia frequents. This came in real handy when we realized that the pediatrician with clinic hours at that moment was booked solid and without connections there was no way we were going to be able to get in to see him.

Well, when we got to the hospital, we went straight up to the doctor's office, my co-worker walked right into the office and greeted the doctor, got a pass, giving us permission to get an appointment with him, and booked an appointment to see him that afternoon. Praise God.

After waiting for a few minutes, while he finished up with a patient, we finally went in to see the doctor. We explained her symptoms and after examining her ear, nose and throat, she said that she probably had a slight case of an infection. Nothing to worry about. He prescribed some fever medicine in case she started to burn up again. But said that she should be fine.

We took the opportunity to ask him to look over some of the results of a head sonogram that Alicia had gotten about a month ago. He looked at the scans and said that the PVL (brain trauma) she sustained at birth, was still there, but it looked like it hadn't gotten bigger, so again nothing to worry about. It meant that we would need to be more wary of her motor skills on the left side of her body, and help her to practice those movements as much as possible. But overall, he said nothing to be concerned about, that in time, she would be OK. And he sent us home.

On the way home, as I was holding her, I noticed that her left hand and arm was twitching. Every second or so, her hand would squeeze and her arm would jerk. At first, I thought maybe it was a side effect of being hungry and not eating all day, cause I noticed that she had also been shivering earlier in the day. We got her home, and Linda told me to give her a bath to wash off any germs or bacteria that may have gotten on her from the hospital.

While giving her the bath, I noticed her arm continued to twitch despite me having given her a cracker prior to putting her into the bathtub. So after the bath, while dressing her, I pointed out the twitch to Linda. When Linda saw the twitch she thought it was pretty weird too. So we started praying. I know some of you don't believe in the whole spiritual warfare thing, but I just had a sense that something was off in the spiritual realm, so I just declared the blood of Jesus over my daughter, and I took authority as her father over her body, and cast out any spirits that were not of God in the name of Jesus. After a few minutes of prayer, her arm stopped twitching. 

But then we noticed that Alicia wouldn't look at us when we called out to her. She kept looking over to her left side, and I noticed that her eyes were rolling into her sockets to the point where her right pupil nearly disappeared behind her nose. I went into serious prayer time at that point. And eventually she came out of it.

Still not sure what that was, Linda called my co-worker who had helped us earlier, who called the hospital and talked directly to our doctor, who told us to go right back to the hospital for him to check her out.

So back into the cab we went, and back to the hospital for a second time that day. When we got there, we waited a few minutes, and the doctor admitted us, and examined Alicia. At that point she had returned to normal, so he asked us how long she was twitching for, and said that she had probably had a local seizure. He said the cause of the spasms could be multiple reasons. It could be that because she had a fever, that the fever triggered some misfiring in her brain. Or, he said it could be that some nerves finally connected from her brain to her arm, and so it was now sending new signals causing her to twitch. In any case, he prescribed her some epileptic medicine, which was kind of freaky when we saw that being typed onto the computer. Also, he told us to schedule a brain scan. He told us that unless she had another episode, that we were not to give her the medicine until after the scan, because it would affect the results.

So again, we collected our medicine and went back home. Back home, we tried to settle in a bit. Linda went out to get dinner for us, while I stayed home and took care of Alicia. Again she was pretty much just lethargic and laid in my arms without moving too much. Thinking that she was probably hungry, I tried to feed her a bit of food, at which point she promptly threw up. After throwing up, she went back to lying in my arms and fell asleep. When Linda got home, I put Alicia down on the couch to sleep, so I could eat. Over dinner, I told Linda about  Alicia throwing up, and she naturally was a bit worried and wanted to go back to the hospital. Being American, and also, having been to the hospital twice that day already, I tried to dissuade her. And Linda agreed to just observe her for a bit longer.

Linda, being the loving mother she is, was feeling really anxious about Alicia and her condition. She really wondered whether we needed to go back to the hospital, and was really worried about whether Alicia would be OK. I could tell that she was really just sad and nervous about Alicia's condition. Alicia hadn't really smiled in the few hours since lunch, and Linda said something that I think captures what she was thinking at that time, pretty well. Linda said, "What if we never see her smile and laugh again?"

For some reason, I at that point just felt convinced that Alicia was going to be OK. And Linda asked me if I was scared, and I said, no. Alicia was going to be fine. We as the children of God have authority over sickness, so we needn't worry. We had a God, a Heavenly Father who was in full control, so we didn't need to be anxious. And besides, being anxious wouldn't fix anything. Linda listened and took it in, but still I could tell she wasn't completely at ease.

I mentioned that I hadn't given Alicia any water after she threw up, so we decided to wake her up so we could give her some juice. She seemed OK after the juice, but after a few minutes she threw up again. At which point Linda decided we really needed some people praying for us, so she called some friends. And I could hear her sobbing outside with weariness and concern.

 About a half an hour after the juice, we tried to give Alicia some milk, thinking that she was probably hungry. Again... throw up. This time Linda was convinced we needed to go back to the hospital, so she called our friend again to see what she should do. My co-worker told her just to wait a bit and see what would happen. If Alicia threw up again, then we should go straight to the emergency room.

After hanging up with her, Alicia did in fact give one last heave-ho, so Linda promptly went to our room, packed a suitcase, we called the cab and off we went for our third trip to the hospital in less than 12 hours. While waiting for the cab to arrive at our house, I noticed a change in Linda's demeanor. She became strong and confident. It was almost as if, once we decided we were going to go back to the hospital, God's courage and strength surged into her, and she started taking charge. Which was actually good, because after Alicia's last upsurge, I felt myself just depleted. I was just emotionally drained and was on the verge of tears.

Again, I couldn't help but marvel at God's blessing in allowing us to be on a see-saw and not both be down at the same time.

When we got to the emergency room, we had to wait in line to register Alicia. Finally, we got admitted and got sent to the pediatric section of the ER. We explained to the doctor what had happened that day, with the fever and also the spasms and we asked if we could be admitted. He looked Alicia over and said, sure. He promptly called and got us a room. Reading her reports from that day, he said that she probably just had a virus of some sort, and told us to give her some of the fever medicine that her pediatrician had prescribed earlier. While talking to him I noticed that Alicia's arm was going off again.

At first, I thought maybe Alicia was just moving her arms like she does when she's trying to dissuade someone from touching her, but I noticed that it was twitching in the same way it was earlier. Since our pediatrician hadn't seen Alicia when she was twitching earlier,  I asked the ER doctor if this was considered a spasms/seizure since I wasn't sure if I was just maybe misreading or imagining things earlier. He said that if we held her arm, and it stopped then it didn't count as a spasms.

But when he told hold of her arm, she continued to twitch, so he said, yes. These were definitely spasms, so he told us to give her the medicine that our pediatrician had prescribed. Then he told us to go over to the side and wait, so they could get a blood sample, and insert an IV into Alicia and wait for them to get our room ready. While getting her IV inserted, I noticed that Alicia was once again looking to her left and her eyes did the rolling into her socket thing again, so I know that I hadn't been seeing things earlier. But just as soon as it started, it stopped and Alicia calmed down.

While we were waiting for our room, the ER doctor came over and talked to us some more. He said that judging by the fever and the spasms, one possibility was that she had a case of meningitis. What's that you ask? Well, we had to ask the same question. It's basically, a bacterial infection of the membranes covering the brain. Sounds scary, right? Yeah. Well, he said they needed to run some tests, but seeing her symptoms, it was a possibility.

Of course, I at that point promptly whipped out my cellphone and started researching meningitis. At which point a nurse came and took us up to our room.

We finally got settled into our room, and laid down to get some much needed rest after a long and harrowing day. Little did we know that the next day would be even more tiring.

Since this is getting long, I'll end this story here. And pick it up tomorrow. =D

To be continued . . .

Thursday, August 30, 2012

Her Eyes

Hey Friends,

When you get the chance, would you please pray for Alicia's eyes?

Linda took Alicia to see the eye doctor today for a followup appointment. According to him, Alicia has some degree of myopia or nearsightedness of about 400-500. And I've noticed this too at home, that when I'm far away from her, she doesn't seem to be able to see me. Sometimes, I'll sit far away from her, and I'll call her name, and she will respond, but not by looking at me. She'll kind of look around to try to find where I am. And I'm not hiding in any way, I'm just sitting far away from her. This doesn't concern me too much, since most Asians grow up wearing glasses or corrective lenses so that's not the end of the world. Besides, I think kids with glasses are cute. =D Of course, ideally, she won't need any glasses at all, and will have perfect vision, because no matter what, glasses or contacts do get to be burdensome at times.

The one thing  the doctor is slightly concerned about is that he noticed when Alicia looks at things up close, her right eye doesn't seem to move to the right very well, resulting in her being a bit cross-eyed. He says if this condition doesn't improve, it may require surgery to correct the positioning of her eye. Not simply laser surgery, but actually physical surgery that re-positions the eyeball.

Naturally, any time we hear the word surgery, especially for a child so young, our hearts cringe and get heavy. But my belief is that Alicia will be fine. We prayed and will continue to pray, and we believe that every part of Alicia's life and body is in God's hands. He's got her.

So we're praying and believing that she won't need this surgery and that God will restore her vision to 20/20. =D  

So please pray with us, and for us as this is another aspect of Alicia's development that we will need to monitor and continue to follow up on. Ask God to give Linda's Momma's heart peace that Alicia will be A-Okay! =D

Thanks, friends.


Tuesday, August 14, 2012


Hi Friends!

I'm sorry, I've been so absent from the blogosphere. On the one hand we've been busy with life and taking care of Alicia. On the other hand part of me has felt that things have been pretty steady and there isn't too much to report. 

But allow me to catch you up a bit on the last few months.

In the few months since my last post, we've been busy. In July, my mom, brother, and sister-in-law came to visit for us for a few weeks. That was a lot of fun. I especially loved meeting my new niece, Hope, for the first time, and seeing her and Alicia interact and play together. 

Hope and Alicia were originally due two weeks apart last September, so it was interesting to observe Hope and see her size, and her development knowing that Alicia developmentally should actually be about at the same place. I know that as parents we're not supposed to compare. And I wasn't really comparing in the "who's better" kind of way, but I was just kind of using Hope as a reference. 

In the end, I realized that each child is unique, and it was good to see what a kid born under normal circumstances would be like, but also to appreciate all that Alicia has been through and to celebrate who she is and her uniqueness. 

During the time of my family's visit, Alicia started creeping and doing the "army crawl" as some people call it. At first, I had thought it was a fluke. One day I put Alicia down on the floor, I turned my back, and the next thing I knew she was farther away from me than I remembered. I thought I was maybe seeing things, but as the days progressed, I noticed her getting farther and farther away, until it was pretty clear, that, yes, indeed, our daughter was mobile. 

And boy was she mobile. Before things like wires and stuff were no threat, now we have to constantly watch her and set up barriers, otherwise, we will end up with a big mess, in many, many ways. 

So that's a huge thing to celebrate and be grateful over. 

Another great thing is that through some family connections we were able to get Alicia an appointment with one of the premier pediatric physical therapy hospitals in Taiwan.  While Alicia has been getting regular checkups and evaluations at our current hospital, and for the most part was falling under the range of "normal", our pediatrician still recommended that we take Alicia to another hospital for a second opinion. I think she saw a few things in Alicia that indicated slight developmental delays, so she felt that it might be better to go to a hospital with a stronger physical therapy department. 

We went to one hospital and we just got a bad feeling all around. The doctor there barely gave us the time of day. When we walked into the office, he didn't even look at Alicia. He simply looked at her records, entered it into the computer and then sent us away to set up an appointment for therapy. When we went to set up the appointment we were told that there was a waiting list and that we would need to wait two to three weeks for a physical therapist to become available and SIX MONTHS for a speech therapist. SIX MONTHS! Well, thinking there was nothing we could do, we put Alicia on the list. 

One month later we still had not heard a word from this hospital. Even though they had told us they'd be in touch in a couple of weeks. BIG RED X on that hospital. Thankfully in the meantime, my aunt whose father (my great-uncle) has a lot of connections with doctors was able to contact one of the heads of physical therapy at another local hospital. Things at this hospital were a completely different story. 

They too were booked solid, but thankfully because of our connections, we were able to get Alicia an appointment with a team of therapists that was recently vacated because of a cancellation. Within a week, Linda and Alicia were at the hospital visiting with a team of therapist and setting up appointments for further evaluation. 

Over the next few weeks, Linda took Alicia to meet with four therapists- a physical therapist, a cognitive therapist, an occupational therapist and a speech therapist. Each evaluated Alicia and wrote their prognosis of Alicia's development up to that point. The evaluation covered things like, motor skills (sitting, creeping, crawling, etc...), speech (cooing, babbling, etc...), cognitive skills (picking things up, reaching, etc...),

Today, Linda went back to get the results. Unfortunately, the results were not as glowing as we had hoped.
When you think of it, we could definitely use your prayers for both Linda and Alicia.
First, they weighed Alicia and in the two months since she was last weighed, she's only gained about 3 ounces which is really not a lot at all. Now we're not sure if it's just because there is a discrepancy between the scales at the two hospitals or what, but this bit of news was a little disheartening for Linda. I'm sure you can imagine, as a mom, you really hope and pray that your kids are getting bigger and stronger every day. And especially for a Mom of a preemie, you really hope that they're getting heavier and growing. You hope that all the struggle of trying to get your baby to eat would result in some weight-gain. But to find out that she's barely gained any weight at all is a bit discouraging.
Then, she met with the cognitive therapist and he shared some concern because a few months ago when they did the evaluation, they felt that Alicia was doing pretty well, she was cooing and making sounds and doing about 80% of what other kids at her age were doing. But now, she's almost one year old (based on her original due date) and according to the therapist, Alicia hasn't progressed very much since her evaluation.
So after hearing the news, Linda was just feeling really down and discouraged and really doubting her capabilities as a mother. She was feeling like she was not doing enough for Alicia, and that she was taking her out too much, and being too lax with her schedule, etc... Doubts that I'm sure many moms face. Definitely, definitely lies from the enemy.
To add insult to injury, after walking out of the therapist office, she saw other moms with their babies and all of them had their moms or mother-in-laws with them supporting them. And being that both of our moms are in the states, she was just feeling like she was on her own dealing with all of this. Now, Linda is a strong woman, so for her to feel like this really shows that she's struggling. As a husband it's hard for me to hear this, because I want to be there to support her and to encourage her, but I couldn't because I've got my work responsibilities.
Praise God though, that he is ever present and he is always with us wherever we go. We are never alone. And Linda knows that and she takes great comfort in that. And praise God that Alicia's life and development is in his hands. The doctors are experts but they are not God. They can only evaluate based on what they know from past experience. Our God is Jehovah Rapha the great healer. He is Alicia's creator and he knows how her body works.

So I have no doubt that Alicia is going to be perfectly healthy and normal. God gave us  a verse for Alicia when she was still in her incubator.
Psalm 118:17 "I will not die, but live and proclaim what the LORD has done." 

Alicia WILL proclaim what the Lord has done, and while yes, I know that there are many ways to proclaim other than through words, but I BELIEVE that she is meant to proclaim through speech the miracles that the LORD has done in her life and in her body. I KNOW and I KNOW that my daughter will speak. She will run. She will dance. She will sing. She will play. She will pray. She will do all of the things that any healthy child will do and MORE! 

And once again, I am faced with the decision, do I listen to the therapist and get discouraged or do I take it as a message from God showing us how to pray and how to bless our little girl. I am going to take it as the second, thank you! And I rejoice! I rejoice that God has shown us how to pray and what to pray for. I rejoice that we get to witness in so many, so many ways God's miraculous power. 

You know, we all want miracles, but none of us want to be in a place where we need to receive one. Well, I thank God that he has put us in a place where we can not only see him work, but also that we can be witnesses and proclaim his miraculous work in our lives. I thank him for showing us where there is "lack" so we can pray "fullness" and "completeness" into that void. 

It is an absolute privilege to be aware of where things are maybe not ideal, and then to watch how God make the undesirable things into fantastic things, how he takes the imperfections and weaves them into masterpieces. So, yeah, I love that we are now aware of where Alicia might have some challenges, so we get to see how he's going to remove them and make them into her advantages. Yes!

We thank the Lord, that he has provided for us a place where Alicia can get amazing help, so that she can get a leg up. We thank the Lord, that we live in a country where these things are covered by insurance, so we are barely paying anything out of pocket for all of this. 

SO PRAISE GOD. PRAISE GOD that we are made aware of a "problem". So that we can watch how he solves it. How exciting!

Right now, I'm waiting to hear back from Linda about the other therapists. But I have peace. I'll try to keep you posted as the information comes in, but in the meantime, join with us, will you?! Let's pray complete healing and wholeness for Alicia. Pray that she would catch up developmentally and even surpass those of the same age group. Also praying for peace for Linda that she would know that she is a great Mom and just be able to give any discouragement over to God. And just pray that Linda and I would have wisdom on how to help Alicia, to be the best parents we can be, and to train her up in the way that SHE should go!
Thanks for walking with us through all of this. You guys are the best!

P.S. I forgot one HUGE praise! It's a well-known fact that preemies and ex-preemies often have weaker immune systems than most. We've heard many stories and warnings of preemies who are constantly getting sick. Well, not our Alicia, by God's grace, in the 10 months that we've had her at home with us, she has only had a slight cold once, and has been otherwise the epitome of health! We are SO SO thankful and rejoice over that. As anyone with kids knows, having a sick baby is no fun. So we thank God for protecting Alicia and keeping her so healthy and strong. =D More Lord, More!

Monday, May 28, 2012

One Year Old!

It is the eve, of our dear Alicia's first birthday. I can hardly believe that it's been a year since the dramatic entrance of our beloved daughter.

At first, I was going to wait until tomorrow to write, but then I realized that today is actually the day to be celebrating. Today is the anniversary of one of the most dramatic days of my life. Today is the day when we made some of the biggest decisions in our lives.

A year ago today, Alicia was still inside Linda's womb, and we had yet to meet or know our baby girl. To me, all I knew of my baby girl were some blurry gray sonograms and what I imagined in my mind. I had no idea what she would look like, what she was capable of, how strong she was, or even the fact that she was indeed a she.

How far we have come.

I still remember those first weary, draining hours waiting outside the OR, for news of Alicia's safe delivery. Then seeing a bundle of pink inside an incubator whizzing past me as she was rushed to the NICU. The memory of waiting outside the then unfamiliar stainless steel door of the NICU with my sister-in-law, her husband, and my cousin-in-law, bleary-eyed and dazed, yet unable to sleep because I was excited and yet anxious to hear the status of my newborn baby girl.

Of course, those first few moments when I saw Alicia will forever be etched in my memory. Walking into the NICU, seeing and being introduced to my micro-preemie palm-sized fairy for the first time, all skin and bones, splayed out with tubes and wires sticking out every which way like some sort of crude biology experiment. It's not an image that I will quickly forget.

Also Alicia's doctor, who at that time was a stranger, now a dear friend, pulling me aside and explaining to me in a strange "foreign language" about everything that was "wrong" with my baby and signing papers giving the her and her team permission to begin treatment. It was at that moment that I really felt like I was no longer a kid. In the past my signature carried the authority to impact my life and maybe Linda's life at times. But for the first time, my signature carried the power over someone who was completely dependent on me. The very act of signing or not signing could mean life or death to this new human being who was only hours old.

Man. Amazing how far we've come.

The three of us- Linda, Alicia and I - have really grown into a family since those early days in the hospital. Alicia is a delight to us and everyone who she comes in contact with. Her smile can brighten up any dull or dreary day and her laughter can raise any sunken spirit. She loves rice cereal made with beef broth. She loves music. She loves paper and other things that crinkle. She LOVES to jump. She can roll over like a pro. She has four teeth and a fifth one that is due to make it's debut any day now. She has started to recognize people and will smile when she sees people she knows. And yet she's not afraid of strangers. She is fascinated by people, and when she meets someone new she will look intently at them as if she is studying their face and trying to memorize or figure out who they are. She loves her hands and you can always tell when she's nervous, because she will just stare mesmerized at her hands and refuse to look up. She sleeps through the night with the best of them, and usually wakes up with a smile. She rarely cries except for when she's extremely hungry or tired.

As for her weight, some of you will remember my daily reports of her weight during her stay in the hospital. Well, it's been over a month since her last hospital visit, so I have no idea of her real weight at this point, but for sure she has grown to more than 11X her birth weight. Amazing, eh? She's outgrown countless outfits and is even starting to outgrow small-sized diapers. In fact, Linda and I just purchased a box of medium-sized diapers for her. We sure have come a long way since her diaper dress days.

These days, when I look back at photos from the early days, I marvel at just how faithful God is. How he has truly been our rock and our provider. How he has kept us steady and been our refuge in the midst of the storm.

Not that I wish you calamity, but I do wish that you would experience just once how amazing it is to have Jehovah-Shammah - the ever present God and Emmanuel with you through any and all circumstances, and how amazing it is to have him as a shelter while things are whirling about you like a tornado. I wish that you could experience this peace that surpasses all understanding and the confidence of knowing that no matter what happens, things will work out for the good of those who are called according to his purpose.

Our journey with Alicia has only begun, I look forward to the days of teaching her how to walk, and dance and sing. I look forward to hearing her calling me Daddy for the first time. I look forward to seeing her learn new things and participating in the wonder of discovery with her.

I must take the time right now to thank all of the different angels that have come along side us over this past year to bless us, guide us, pray for us and cheer us on. We cherish each one of you.

Much Love,
Campbell a.k.a Alicia's Dad



Saturday, April 28, 2012

The Race to Amazing

I, Linda, will be getting up tomorrow morning at 5AM. Why the (l)insanity? Because I am participating in the 2012 Nike Amazing Women Race. The (direct translation of the) slogan of the race is "Together Amazing" or in more colloquial terms, "Let's be amazing together". This is my first race. Ever. Actually this is the first time I am paying to run. Well, to be even more candid, tomorrow will be the first time I'll be "running" more than a mile since jr. high. I was in band in high school; that took care of the P.E. requirement. Yay! Go band!

When Emily, one of my closest girlfriends who is also an amazing athlete herself, asked me to run with her, I thought she lost her marbles. I don't run. I don't like running. I definitely don't feel God's pleasure when I run. Running in a race is not my idea of a great morning spent. In fact my reasons for running would be: I have less than 5 seconds to make it across the street before the light turns red. Or oh! The phone is ringing; I better run across the room. Or ah! The water is boiling. Turn off the stove! I run to turn off the stove. You see. Those are legitimate reasons.

So why did I decide to pay someone else to run? (Seriously, I think someone needs to be PAY ME to run.) Here are the reasons I'll decided to join the race.

1. I should do something "fun" and challenging with my sisters. There are so many women I know who are running in this race. Good way to bond with other sisters. (Although there are so many other ways to treatments, hair washes, afternoon tea, a nap...)

2. After I delivered Alicia, it would be a good goal for me to start exercising and training for the race. (I have to confess and you can ask Emily, my coach, that I have not trained or prepared for this race at all. I think I'll be walking in tomorrow's race.)

3. My real reason is actually for Alicia and our journey for her. Tomorrow, Alicia will turn 11 months. She will be one month away from turning one year old.

... Wow. Let me just ponder that for another minute.

I feel like this past year can be described as one wild race. We started the year with my pregnancy. There were a few scares along the road but God remained so steady. And what an arrival with Alicia being born at 25 weeks. Then Campbell and I started running a different kind of race. A race that challenged our stamina in faith and trust.

And though the race between home and the hospital is over, (thank GOD!) now we are jogging through the day caring for Alicia at home. So because of Alicia's almost one year old birthday, this mama decides to do the impossible to celebrate life and the journeys in life.

When I told one of my dear sisters, Andrea (also a runner herself), that I'll be running this race, she was overjoyed. She then shared with me that she also ran this race last year on May 29th, Alicia's birthday. She said that the night before she stayed up all night to pray and interced for our family. Then the morning, she got up and ran the race for us. She felt and received complete victory for us. When I heard this, I was completely overwhelmed in love and thanksgiving. I am a blessed woman to have such dear dear friends that love us. It made me even more sure that Daddy God wants me to participate in this race.

And so, I'll be running this Amazing Race tomorrow. I'll be sure to let you guys know how I do!

Let's be amazing together. Let's run this race to Amazing. The true author of our faith and the one who is amazing. The one who holds us as the apple of His eye. The one who is our coach and whispering in our spirits, don't give up. Keep running the race because as we run this race of life, we are all in process of becoming even more amazing.

Monday, April 16, 2012

We Have A Roller

Milestone alert! Milestone alert!

Alicia has officially become a roller. =)

Those of you who are closer to us may remember us posting several months ago that Alicia had rolled-over. Well, for some reason back then, she only did a few times and then never again. And back then she went from front to back. But now, she's doing the back to front roll on quite a regular basis.

For awhile there was a twinge of concern because she hadn't been really that mobile and when we went to see a therapist a few weeks ago, that was one of the concerns they had because at Alicia's current adjusted age, she should be rolling.

So Linda and I got to work. We would help her roll, and encourage her by putting toys just out of her reach. For a few months, she would get half way and then kind of get stuck. She couldn't quite figure out how to get her arm out from underneath her.

Eventually, she progressed to a 3/4 roll, where she'd get her head and the bottom half of her body over, but the torso would still stay in the original position. Just this past week, I got a call at work from Linda telling us that our princess finally was able to get herself all the way over.

We were more than thrilled.

It's also been fun to see how she's gotten better and better at her new skill. In the beginning, she'd have to do this wind up thing where she'd summon up all her strength and then throw herself into the turn. Eventually, she got smoother and smoother, and just now as I started this blog, she flipped over quite effortlessly with barely a grunt.

Of course, now that she's more mobile, we've got to watch her. No more leaving her unattended on a bed or other surface. Man, I had a couple of moments of "fails" as a father this week.

The first happened earlier in the week. Right now, along with the rolling, we're also helping her to practice sitting up. So I had her sitting in front of me on the hardwood floor in our living room. All was going well, until she suddenly jerked and slipped out of my grasp. She lurched backwards, and BAM, her head hit the floor.  Of course, she promptly started to cry. And I just felt awful as I scooped her up to comfort her.

Amazingly, Alicia cried for not more than a minute and calmed down. Then a few minutes later, and actually ever since then, any time I lay her down on her back, even gently, she will hold her head up to brace herself and keep from hitting her head. How smart is she?

A few days later, Alicia and I had just gotten up in the morning. I brought her upstairs so I could feed her breakfast. I sat her down in her highchair and went to the kitchen to prepare her food. As I was walking away, I had a fleeting thought that I should buckle her into her chair. But I just brushed the thought aside thinking, where was she going to go? Yeah. I need to listen to those little promptings more often. I was in the kitchen prepping her food, when I hear a cry of desperation emanate from the living room. I rushed over, praying that everything was OK to find Alicia had somehow slipped out of her seat and was facedown in her seat with her head and body stuck between the chair and the chair's tray. My best guess is that she decided to practice her new skill in her chair and ended up slipping down. Thankfully, her chair has a little ledge where her little feet landed, otherwise, I have no doubt she would have ended up on the floor.

Lesson learned. Please don't call child services on me.

We're so thankful that she is progressing and growing. Thus far, things look good. Linda took Alicia to the physical therapist last week who said that Alicia is doing well so far. Of course, he said, it's still too early to say for certain whether she is 100% normal despite her brain damage. But you know what, we're good. We proclaim in faith that she is 100% normal, and that she is developing just fine. =)

She is a sweet girl. Linda tells me somehow she knows when I come home. Every time I open the door, Alicia's face just lights up with a huge smile. That just truly warms this Daddy's heart.

I love our little bean. =)

Thursday, March 29, 2012

10 Months

Our baby Alicia is 10 months old today. 10 months! That's over 3/4 of a year. Amazing. And for the past six months, we've been enjoying, celebrating, at times enduring the life we saw by faith during those first few trying months in the hospital.

I think more than anything this experience with Alicia has deepened Linda and my faith, and shown us what it truly means to live a life of faith. I think the best description I've ever heard of faith is seeing something in the future as if it had already happened. In other words, having a memory of something that has yet to happen. And that truly was what Linda and I experienced during the first third of Alicia's young life.

During our residency in the hospital, though the prognosis was often otherwise,  Linda and I would see glimpses in our minds of the day when we would hold Alicia, hear her cry, see her smile, play with her. Things that we now do on a daily basis. This is no credit to us. I know that we were purely thriving on God's grace and the prayers of all you saints.

Prior to becoming a father, I would often hear people tell me that once you become a parent, you get truly a deeper grasp of the Heavenly Father's love for us. And I think I've always accepted this to be true cognitively, but it's not until these last 10 months, that I've truly begun to understand in my heart just how true this statement is.

A few examples. I don't know whether it's because we've got a kid in the house and they tend to carry germs more easily, but I've had several minor colds in the past few months. Prior to Alicia I'd get sick maybe at most once a year, now in the past 10 months, I think I've caught about 3 colds. During the previous cold, Alicia had also been sick. And that was misery for her and for us too. Because of her sore throat, it hurt for her to eat. And so though she was hungry, she would turn her head away, cry and flail her arms in an attempt to keep the bottle away from her. Poor girl. Thankfully, with some medicine she was feeling better within a few days, just in time for a couple of her teeth to start popping in. Causing a whole new round of hunger coupled with refusal to eat. But I digress.

Over the past few days, my throat has started to feel funny again, but so far, it seems that I'm the only one infected. Praise the Lord. The other day, while I was washing dishes, I started thinking how grateful I was that I was the only one who seemed to be uncomfortable. In fact, I thought, if it came down to it, I would take on any cold, any sickness, if it meant that my baby girl could be healthy and enjoy her life. Then the though occurred to me, this, on a much small scale, must be how God felt when he sent Jesus to this Earth to die for us. He would rather suffer, than have us suffer. He would pay any price so we could have life, and have life to the full. Amazing.

One other example. Babies are constantly changing. When Alicia was first born, her looks were still developing so it wasn't really clear whether she looked more like me or Linda. We pieced together that she definitely has Linda's eyes and my nose, but the rest of it wasn't so clear. Well, over the past few months, Alicia has truly been morphing into a mini-me. Which could perhaps be chalked up to this father's overgrown imagination if it weren't for the fact that nearly every person Alicia meets comments on the fact.

And if I'll be honest, every time I hear someone say, "She looks just her father." My heart swells. She is mine. She bears my image. And once again, I can't help but think about our Heavenly Father, and why he made it a point to tell us that we were also made in his image.

One day, I was holding Alicia in my arms and just staring down at her and saw a cuter, more feminine version of my face staring back at me. I saw a reflection of myself in this little girl, and my love for her just expanded. Not because of some narcissistic love for myself, but because I realized this is truly my daughter.

And I can't help but wonder if that's how God feels when he looks at us. He sees a reflection of himself in us, a mark that we are truly his children, created to belong to him, as a part of him. Also, I can't help but think how the Father's heart must swell each time one of his children is recognized as his. Each time someone acknowledges that one his children bears his image and is just like him. It's no wonder that he is constantly working to transform us so that we can be more and more Christ-like each and every day, so that we can be his ambassadors in this dark world. So we can be Christians - little Christs for those who have never seen or don't know God.

I have just only begun this journey of fatherhood, and while definitely trying at times, I wouldn't trade it for anything. Alicia is truly a treasure, and I think I will never stop taking pleasure in showing her off to the world. =) She's our little sunbeam. She carries a bit of both Linda and I in her, and I cannot wait to see the kind of woman she develops into. But in the meantime, I will cherish each moment I have with her. I will cradle her as often as I can, and relish in the moments when she nestles with total abandon in my chest. I know these days will pass by in a blur. Soon she will be too big, and too "grown up" to nestle. But you know what, no matter how grown she gets, she will forever be my princess. My precious girl.

Happy 10 months, baby girl. Daddy loves you.

Wednesday, March 28, 2012

Good Results

Alicia is asleep. My heart is at rest as well. Today has been a good day. Thank you for praying with us, friends. Your love has been received and we carry it dear to our hearts.

Campbell and I took Alicia to the hospital today to hear about the results of several tests. I was so glad that Campbell could come with us since this appointment was pretty important. I didn't want to face Alicia's doctor alone. (A clarification: Follow up appointments for a preemie are crucial in determining how well she is doing and growing. The follow up appointments happen at six months, one year, one and a half year and two years old.) Two weeks ago, Alicia had her six months development evaluation. She also had a hearing test and a brain scan. We found out the results of all these tests today. 

The results are:
Alicia is doing well. 

1. When Alicia was born, she had experienced a bit of brain trauma. Most preemies born that early would more likely to have some kind of brain trauma. Because of this, her motor skills may or may not be affected. So far, her limbs are not overly stiff or limp. So this is GOOD. 

2. She is quite strong. Her neck support is excellent. She can hold herself up well when she is on her tummy. 

3. She is quite responsive and social. She is pretty vocal. There are many times I know she's talking but I can't understand her language yet although her facial expressions are very telling of her feelings. She loves having people around. She is not shy; actually she is very fascinated with people's faces. She loves to smile and one of my most favorite thing to do is to make her laugh-which to her mama's great joy--she does often.

4. Her hearing is normal.

5. Her brain scan shows the same white matter in the brain like before. So that's good. Her pediatrician says everything looks OK and stable. She says we don't need to do another brain scan in a long long time.  :) 

There are some area that needs improvement.

1. Her size. Her weight and height are below average. Of course, this is compared to babies at 6 months. So definitely, she is a lot smaller. That's OK. But the thing is she lost a bit of weight this month. Dr. Chang (her pediatrician) is not worried though. Alicia has been teething this month and hasn't been eating well. So she says just try our best to feed her and give her more solids. 

2. Her motor skills. Ever since her development evaluation, Campbell and I have been daily helping Alicia practice grasping toys and playing with them. And she is making great improvements already. She's been grasping her toys and chewing on them like a champ. :) According to Dr. Chang, at six months, babies should be able to grasp and hold toys and switch the toy from one hand to another. Alicia hasn't gotten to this level yet.

3. Her left hand is noticeably weaker than her right hand. This is probably due to the brain trauma. We just need to help her exercise her left hand more. We will also go see a physical therapist who will help her as well.

4. She hasn't quite master the skill of rolling over. She has rolled over a few times but it happens sporadically. So we've been helping her flip over every day. She's getting better though. She can flip to her side on her own and she is quite the little mover already. For example, I lay her down vertically and the next thing I know, she's already horizontal on the bed. 

A very possible reason to why there is this delay to her development is simply because she is still quite small. So her strength may not be as strong and her hands may not be as big to comfortable grasp the toys. But she's getting there. 

There was a few times throughout the hospital visit today where I felt like I have not taken care of Alicia well. I questioned whether I am adequate. In fact, I felt very inadequate. Campbell could tell and told me to stop beating myself up. I just felt like I should have fed her better or tried feeding her more solids this past month. I was disheartened to find that her weight was down. I voiced my heart to Dr. Chang who so tenderly reminded me that Alicia has already made such remarkable leaps of growth. I need to be patient with myself as much as I need to be trusting and patient with Alicia's growth. 

I shook off the discouragement and thanked the Lord for His faithfulness. Praise God that He got us through these weeks of tests and evaluation. Thank Daddy God that we know how we can parent and help Alicia. It was a great day at the hospital. Campbell and I walked out of Mackay Hospital with a joyful heart. 

And tonight after dinner, I bought two books for myself. One is a baby food cookbook and another is great book about baby's development and health. Both books are in Chinese. I am looking forward in improving my mama's skills as well as my Chinese. This mama is growing up with her daughter. 

Family and friends, thank you for your prayers and love. Thank you for walking with us not just today but throughout our journey. What an adventure it has been already. Even though many people still make comments about how small Alicia is. My heart swells looking at how BIG she is already. She is doing so well. Campbell and I are so proud of her. We go from glory to glory, strength to strength. Because God is with us, each day gets better and our strength only gets stronger. 

"It is good to give thanks to the Lord,
    to sing praises to the Most High.
It is good to proclaim your unfailing love in the morning,
    your faithfulness in the evening" Psalm 92:1,2

Thursday, January 26, 2012

Back to Where it All Began

We took Alicia back to visit her NICU today. Quite epic, if I do say so myself.

As part of our Chinese New Year vacation plans, we scheduled time in Taichung to see my sister-in-law and her family. Of course, Taichung is also Alicia's birthplace, so seeing as we were in town, we made it a point to make time to go back and visit the doctors and nurses who were so vital to Alicia's care during the early days of her life.

Earlier this week, Linda contacted the head nurse at our NICU to let her know of our plans. She like 90% of Taiwan was also on Chinese New Year break until today. When she got back to work this morning, she informed her co-workers in the NICU that we were coming today, and from what I hear there was quite a buzz of excitement over the return of our little princess.

We were a little late in arriving at the hospital this afternoon. As we were pulling up to the parking garage, we got a call from the head nurse asking us where we were because everyone was eagerly anticipating our arrival. I had no idea how eager everyone was, until the elevator doors opened and we were greeted by an entourage of nurses and doctors at the door.

No sooner had I freed Alicia from our Baby Björn and she was in the arms of her primary care physician. Seeing the joy in her face and the faces of our nursing friends at seeing Alicia really warmed my heart. They really loved our little Alicia, and I could tell that they were really excited to see how much she's grown and how well she's doing.

We also got the privilege to meet the mom of one of the current NICU residents. The NICU had contacted Linda about a month after we left, asking if they could put her in touch with this woman, because they believed that Linda would be able to offer some comfort and encouragement to her. So Linda has been talking to this mom for several months now, and Linda invited her to come to the NICU today so that we could all meet up. The NICU doctors were really great, knowing that Linda and this woman had a special relationship, they let us in so that we could meet Alicia's classmate, Baby Lisa. The neat thing is Baby Lisa is the current occupant of Bed 13, Alicia's old spot. And as the nurses pointed out, their names are really similar - Alicia and Lisa.

What you say? The two names aren't similar at all? Well, that's because you're pronouncing Alicia with an American accent. You forget our Taiwanese nurses have renamed our daughter Ah-Leesa. HAHA. Lisa - Aleesa, pretty similar, eh? =) haha.

Anyway, it was kind of surreal being in our old spot, standing over an incubator, with a baby looking so much like our little Alicia did back so many months ago with her blindfold, oversized diaper and tubes. However, this time it wasn't Alicia we were looking at. Alicia was being cradled in one of the nurses arms, looking somewhat giant next to her younger classmates. This time we were staring down at someone else's daughter. It felt like more than a lifetime ago when we ourselves were in that same spot, encouraging our daughter to breathe and to get stronger so we could take her home. In fact, it felt like another lifetime, someone else's lifetime when we ourselves were clinging onto our doctor's every diagnosis, every day praying for good news.

It was also during our visit that I was reminded again of how pavlovian I had become to the sound of monitors beeping. During our visit with Lisa, her oxygen monitor started beeping, and without thinking my eyes flickered straight to her monitor to check her vitals. My response didn't even strike me as odd until a few seconds later when the doctor noticing my reaction asked me if these sites and sounds brought back lots of memories. Truth is, they did. But again, it really felt to me like another life, another time.

Looking at our daughter, we truly do just rejoice. She is truly a miracle to behold, and a beauty to relish. Being back in Alicia's, what the Chinese call "niang jia" or "maiden home" I couldn't help but be filled with gratitude for how far we've come in our journey with our little girl.

I heard a description today of living a life of faith that I felt was a really apt description of what Linda and I went through. The speaker in describing a life of faith stated that it is basically having memories of the future in the present. And that's exactly how Linda and I felt during those four months while Alicia was still in the hospital. Each day, we could see, feel and remember the sensation of having Alicia home with us - holding her in our arms, playing with her, bathing her, putting her to bed, changing her diaper, etc... - even though none of it had happened yet, and everything around us was telling us that it may never happen. We saw it in our mind's eye, in our spirit as if it had already happened. And now, it's a reality.

It's like I've said before, during those for months, it was as if we were waiting for our present reality to catch up with what we saw with eyes of faith.

God is good. He is powerful. Alicia is a living testimony of that. To God be the glory.

Friday, January 6, 2012

Sleeping Beauty

Alicia is asleep in my arms, and so I'm typing one-handed right now while pondering the age old question - to wake or not to wake.

To try to answer my question, I did what any young X-gen parent of the 21st century would do - I googled it. Answer I found - it depends on your child's age and weight. OK. So is that birth age or adjusted age? =) Sorry, preemie-parent humor.

But honestly, looking down at my daughter right now, I truly marvel at how far we've come since our days in the NICU. There was a link on the webpage I was reading to an article about caring for preemies, and I felt kind of odd reading it, like, I was reading about something that was completely irrelevant to me. The funny thing is that not too long ago, this article had everything to do with me and my family. But looking at my rosy-cheeked daughter fast asleep in my arms, those days of tubes, vents and wires seem like a far-off dream.

Back then, I often dreamed and pictured what life would be like when we brought our little girl home. Faith told me back then that even though Alicia's prognosis for survival and full health were slim, that we would one day have her at home with us healthy and whole. I had no idea however, that those days in the NICU would so quickly fade into a distant memory for me.

Alicia these days is 100% healthy and whole. She is like any other normal, bouncy 4-month-old, her size the only giveaway that she was ever a preemie. She loves to stand up and test out her legs, and she has the most adorable, most curious eyes you've ever seen. One of Linda and my greatest pleasures is to smile or talk to our daughter and have her reward us with her cute, toothless grin. Also, the sound of her laughter and cooing is seriously something to be cherished.

It's a new year, and who knows what it holds. A year ago today, we had only just learned about the existence of our little Alicia Charis, and today, here she is in my arms. Crazy.

As our Christmas card said, "Glory to God in the Highest." For truly, for me to have a baby girl in my arms cutting off my circulation as I type these words, it's truly amazing.

May God bless you all in the new year and may your greatest wishes and desires be fulfilled over the next 12 months.