Mia's Surgery Date

Mia's surgery was scheduled for the morning of April 21st. Stef got a ride to the hospital from Kris that morning, then came to Mia's room to hang out before the surgery. The doctors came soon after she got there, then ushered us to a room which acted like a hub between the surgery rooms and the main hall. We took a picture with Mia, then sent her off with the surgical team, telling her that we'd see her in a while. She showed no signs of being upset, though she surely had no idea what was going to happen, except that the doctors were going to "fix her heart".

We made our way back to Mia's room, where a pregnant Stef decided to pass the time resting. With Mia out of sight and in the doctors' hands, there was no way that I would get any rest, regardless of how tired I was from not sleeping at all the night before. Wanting to find some way to pass the time, I opened my computer and called family on Skype. It was nice to distract myself with uplifting conversation with people I love.

Even when you're able to distract yourself, you can never fully get an in-progress surgery out of your mind. I tried to stay positive, but even then, I still envisioned each gut-wrenching step of the process. About 45 minutes to an hour into the procedure, I thought, "Right now, she is probably fully prepped for the start of the procedure." I prayed that everything would go smoothly in each particular step of the surgery. That the surgeons' hands would be precise. That the heart bypass machine would work properly. That she wouldn't bleed too much and need a transfusion. 5 hours of doing that can seem like an eternity.

Before the surgery, Mia and I repeatedly watched a couple movies--Mary Poppins, and My Neighbor Totoro. Both movies focus on the innocence of children and their relationship with their father. In Totoro, two young girls who live with their dad while their mom is hospitalized run around and explore their new surroundings in rural Japan, letting their imaginations run wild. Before the surgery, Mia and Kelsey would run around and play together, much like Satsuki and Mei from Totoro, albeit a bit younger. Totoro became a big part of my life while in the hospital with Mia, as she would ask to watch it multiple times each day.

"What do you want to do?" I'd ask.
"I wanna watch... I wanna wanna watch.. Totoro!" she'd reply, likely looking for some sense of familiarity while stuck in such a strange setting.

It was either that or, "I wanna wanna watch... Mary Poppins!"
"Oh, you want to watch Mary Poppins again?"
"Yeah! Mary Poppins!"

I probably watched Mary Poppins thirty times while Mia was in the hospital, and I never got tired of it. The timeless music, performances, and themes of childhood, parenthood, compassion, and responsibility resonate with me. I can relate to the banker father who needs to be more loving and compassionate with his children. Causing me to reflect on the times when I've been less patient or understanding with my kids than I should be, watching Mary Poppins gave me ample time to consider how I can be a better dad.

Both movies provided me with plenty of chances to stave off thoughts of how I would deal with the loss of a child. While waiting for her surgery to end, I couldn't help but hope and pray for a time when Mia and I could do simple things together, like watch a movie. I will never be able to watch either movie, or hear a single song from them without being reminded of the profound love I feel toward my children. I hope they do and always will know that I love them.

The doctor contacted us about an hour and a half before I had expected. Mia's surgery had finished without any complications, and she was recovering in the ICU. He invited us to take a look at her. They said she'd likely spend a couple days in the ICU before being transferred back to the PHCU room where she had been before the operation.

In the ICU, Mia was sedated on a hospital bed with various tubes going into her chest, throat, and inner thigh. They left the breathing machine on for the first while so that she could ease back into using her lungs. The doctor showed us the incision on her chest, which he had intentionally made smaller than usual, and was quite a bit smaller than I had anticipated. She hadn't lost much blood during the operation, and so they hadn't needed to perform a blood transfusion (and wouldn't need to, provided that she didn't develop dangerous levels of anemia).

Stef and I asked permission to take a picture of her, then left so that they could keep administering her post-surgery treatment.

The day before Mia's surgery, I had made arrangements to stay at a special housing place for family members of patients. We expected her to be in the ICU for two nights, the second of which I would spend at the family housing place. Making arrangements was actually quite the ordeal. They sent a representative to the PHCU before the surgery to meet with me and verify with the hospital staff that my child was actually hospitalized. After filling out multiple forms (seriously, how involved does it have to be?), the housing rep explained that I'd need to contact them again during business hours the day I was going to stay. They wanted to show me exactly how to get to the building, and weren't content with drawing a map.

The next day, I had an appointment at the insurance center in Imabari, so Stef and I planned to go back home after the surgery. The hospital staff had given me information about supplemental aid from the city for children who have surgery or disabilities, and I had to go back to fill out paperwork. My appointment was set for 1 in the afternoon, so it was doubtful that I'd be back in time to meet up with the housing people. Given that I would need a place to sleep the next night, I was pretty stressed about making it back in time.

On the way out to the train station, Dr. Fumiaki Shikata, one of the members of the surgical team, accompanied us. He wanted to point us in the direction of the family housing complex, but actually ended up taking me directly to it. I called the housing rep and explained that I knew exactly where it was, and asked them to leave the key at the front desk of the PHCU.

In the end, it was all moot. The next morning, the doctor called to tell me that Mia was recovering quickly and was ready to be transferred back to the PHCU after just one night in the ICU. Also, I don't know how necessary it was to get that aid, since Mia's hospital bills are fully covered until age 6 by our Japanese health insurance. Even though I may have wasted a few hundred yen and some time, it was certainly nice to sleep in my own bed that night.

I needed the rest for what was about to come.

The Hospital Room

The night before leaving for the hospital, I packed a large suitcase full of clothes, books, toys and personal electronics. I figured I'd have a decent amount of time for language study while Mia recovered in her hospital room. I tried to get all of the paperwork ready, but couldn't find Mia's insurance card, which I had last seen at Mia's previous hospital appointment weeks earlier. Hours of combing through every nook and cranny of our apartment proved futile, so I called the hospital help line and made sure that we'd be able to check in without our insurance card.

The next morning, Kris, our Canadian friend and neighbor, drove me and Mia out to the hospital. We took a mountain road which I had never taken before, and got to the hospital in good time. Kris held Mia as I checked in and tried to explain to the receptionist that I had lost the insurance card. As grateful as I was for Kris' help, I admit that it felt a little strange to feel everyone's eyes on us, likely thinking that we were a couple. Once everything was sorted out, they directed us to the 3rd wing of the second floor of the hospital, the Pediatric High Care Unit.

In Japan, any child's non-ICU hospital stay requires a parent or guardian to stay with the child at all times. There's no full care like there is back home. While I'm sure that helps keep costs low, it sure is nerve-wracking to feel like your own child's well-being while in the hospital is in your hands--especially when you're not sleeping or stressed out for other reasons (which I'll get to later). When I got to the PHCU, I talked to the nurse at the front desk, who offered to show us to our room.

Kris had told me that each of her children got private rooms when they had procedures done at that hospital and stayed in the PHCU. When the nurse ushered us into a room with four sliding curtains to section off "rooms", I started sweating. It got worse when one of the three other patients staying in the room, a little girl under two years of age, started screaming. I looked at the space available in the curtained-off section and my nervousness turned to despair.

There was no way that a bed large enough to fit me would fit into that space. Even if there were a way, there would be no way that I could sleep for two to three weeks with nothing more than a curtain to separate us from potentially three crying children. More importantly, there was no way that Mia would feel comfortable in such a setting.

"This will not work. There is no way. No way," I repeated to myself and Kris as I desperately searched for a solution to the plan. I went to the PHCU desk and asked the head nurse if there were any private rooms available. I was willing to pay if it came down to it. I referred to the hospital information guide that I had received at the front desk, which contained info about private rooms starting at 3000 yen per night. "Sorry, there aren't any of those left," replied the nurse. Not willing to let things be unless they absolutely had to, I mustered the best "worried" face I could and mentioned that I thought that it "might be a bit difficult" to make that room work. The nurse walked away and, after a few minutes, came back with a solution--a private room that was completely empty, but was being used for some other purpose. To top it off, it didn't cost me any extra.

Why they weren't using that room wasn't exactly clear--it's possible that they keep all the patients in the same room to make it easier for them to keep watch. Regardless, I was grateful that they were willing to accomodate me, even if it was clear that I was seen as a bit of a nuisance. After I moved all of our stuff into the private room and said goodbye to Kris, I went down to the basement floor of the hospital to get my bed.

When you stay with a patient, you have to rent all your bedding from the hospital. They won't let you bring any sort of bedroll or blankets, and they clearly make money off of the whole process. Knowing this beforehand, I decided to bring a blanket and pillow anyway, because I knew that I'd have a hard time sleeping on the bags full of rocks that they call pillows. I told the lady down at the bedding rental desk that I didn't need anything but the bed, and they gave me a six foot-long plywood foldout mat with sliver-thin vinyl facing masquerading as a cushion.

There's a problem with six foot-long plywood foldout mats with sliver-thin vinyl facing--and not just that they're as hard as a rock and less broad than my shoulders. They're six feet long. And I'm longer. Much longer. I set it up in the room and tested it to see if I'd be able to sleep on it, and immediately knew that I was in for a rough three weeks. I sheepishly asked the nurse if there was any other solution, and mentioned that I was willing to pay for anything suitable. They brought me another folding bed like the one I had, and told me that they wouldn't charge me for it. I placed them side-by-side and saw that one was about an inch taller than the other. I couldn't lay in the middle of them because of the ridge, so laying diagonally across both beds was the only option, and even that didn't seem to be very comfortable.

I brought my laptop with me hoping that I'd be able to get an internet connection. The hospital offers an free wired connection from 6 AM until 9 PM, outside of which hours you get a message telling you that you need to come back later. When I hooked my computer up, I couldn't even get the welcome screen to pop up. The room truly had not been set up for patient use, so the internet was not yet functional. They sent a networking expert down to get the room set up for future internet use. We spent about an hour trying to get the connection up and running, but couldn't seem to get the network to issue an IP address in that room.

That afternoon, Mia had some tests, including a blood test, a heart ultrasound (echocardiogram), and a chest X-ray. I had to leave to take care of that, but told them that they could work on it without me there if they so desired. When we got back from the tests, the computer was connected to the hospital network's welcome screen, ready for me to enter in a username and password. I was ecstatic to have an internet connection, but sure that I wouldn't be able to Skype, since I figured that it the hospital blocked the ports necessary to use it. To my surprise, even Skype worked.

I feel really fortunate to live in this day and age, where I can talk to and even see people that are far away as though they're right next to me. It was a life saver to be able to see Kelsey and Stef, and have them video chat with Mia. As long as it wasn't after 9 PM or before 6 AM. There must have been someone manually flipping an internet switch every morning and night, because I got the "outside of usage hours" message all the way until about 6:45 AM every day, and it didn't actually get disconnected until some time around 9:45 at night. It would have been nice to have the connection all the time, because I typically couldn't get much done while Mia was awake. When I had the most free time for study or blogging, the internet was unavailable. Still, I'm glad that I had it during the day, as it helped to keep me occupied for the first couple of weeks.

That first night was not a good night. All out of medicine for my rhino-sinusitis (Latin for "inflammation of the rhinoceros horn stuck in your face") and unable to take my mind off of Mia's surgery and the craggy "bed", I did not sleep at all until about 5 AM, when I became so exhausted from the previous day's events that I could have slept on a bed of nails, broken glass and hot lava. Surprisingly, Mia slept through the night in her unfamiliar surroundings. I was expecting a bit more resistance from her in her prison cell hospital bed. The nurses came in at 7:30 to get us up for the day. We had more tests (including a CT scan) on the docket, as well as a meeting with the chief surgeon to explain the procedure and all its possible risks and outcomes.

During that meeting, he asked me if there were any worries or concerns I had. I admitted that I was worried about whether or not I'd be able to sleep well, since the bed was a bit small and I was out of medicine, but shrugged my shoulders and said that I'd keep on keepin' on. He asked for my height and then asked the nurse to help me find something more comfortable. They pulled an electric examination table out of one of the exam room and asked if that would be sufficient. It was just long enough, quite a bit wider, and actually had a cushion. I was thrilled--it was much better than what I had before.

I felt a little guilty about asking for stuff when the other patients' parents made do with what they were offered. I apologized profusely for inconveniencing the staff, but deep down, I was glad that I went to the trouble of asking for help. It's often true that the squeaky wheel gets the grease.

Mia Admitted to the Hospital

On April 13, I got an e-mail from Mia's doctor at the university hospital in Matsuyama. We had been waiting to hear about her heart surgery, and began to worry that we might have to get it done after the move back to America. I had sent an extremely polite Japanese e-mail to the doctor about five weeks earlier, but didn't hear back. Tired of waiting, I contacted Mia's doctor at the local hospital and asked him for his opinion. He promised to contact the other doctor and have him contact me. A couple days later, I got this response: "How does next week sound?"

Just five days later, on April 18th, we admitted Mia to the hospital for heart surgery.

The few days leading up to her hospital stay were jam-packed with stress. First, I had to notify the board of education and each of my schools that I wouldn't be coming in to work for the next few weeks. Having previously verified that I had a month's worth of paid time off saved up, I was surprised when my request was met with a bit of resistance. One person even asked me why I didn't just have my wife stay with Mia. My wife. My 34 weeks' pregnant, non-Japanese speaking wife. Not likely.

We figured we'd know about the surgery at least a month in advance, since we would need multiple visits in order to store enough of Mia's own blood in case she needed it during or after surgery. The doctors, however, felt that having blood drawn in and of itself was taxing for a toddler, so they opted to just bypass that step and use someone else's blood in the event of a transfusion.

(Edit: May 24) Bear with me as I jump around over the next few entries. I'll try to keep everything in chronological order, but I'm going off of sparse notes that I kept while in the hospital.

Mia's ASD Procedure

A few weeks ago, we took Mia in to see her doctor here in Imabari. She hadn't been to the doctor for a while, but we wanted to them to take a look at her heart to see how it was doing. A chest x-ray showed an enlarged heart, taking up over 60% of the width of the chest cavity. Optimally it should be less than 50%.

Mia was born with atrial septal defect, a hole in her heart that allows blood to flow between the left and right atria. We've had to keep watch on the hole to make sure it doesn't get too big. Since the beginning, we've known that she'd likely need some kind of heart procedure before starting grade school. There are two procedures that can close the hole in the septum, and the size and location of the hole dictate which of the two procedures will be done. The first one, available to children of almost any size, is a traditional form of open heart surgery, where an incision is made and the hole is patched. The second, less risky procedure, involves running a catheter up to the heart with an expanding umbrella-like device that plugs the hole.

We stayed a third year because the doctors told us that she should be able to get the procedure done once she reached 22 pounds, which is about what she weighs right now. When we took Mia in a few months ago, they casually mentioned that she could possibly get the procedure once she hit 33 pounds. Needless to say, we were upset, since there's no way she'll be 33 pounds by the time we leave. However, they said that the hole didn't seem to be getting any bigger, so we were somewhat relieved, holding on to the hope that the hole might close on its own without any intervention.

Having not visited the hospital for a good while, we were a bit surprised when we saw the size of her heart. The doctor, fearing that the hole might have widened, suggested that we set up an appointment for Ehime University Hospital, where they did her heart exams in the past. When we went in for her appointment, we found that the hole has gotten bigger. The doctors think that it would be best for her to get the surgery in the next year or two, and unfortunately don't think it will be possible for her to get the catheter procedure.

The procedure itself takes a few hours, but they figure she'll need about 5 days of preparatory hospitalization before the surgery, and a 2-3 weeks' stay after the procedure. There's a 0.5% mortality rate in Japan for ASD surgery--we feel confident that Mia will be OK. We definitely want to get it done before we move back home, since the procedure itself would be free in Japan, given Mia's age. I still haven't lined up a job for when I return, so it's unclear how long it'll take for us to be insured and able to cover such an operation. But now that we've given them the green light on the surgery, we're faced with a few problems (other than the obvious ones associated with risks and recovery).

The first is that we still don't know when they'll be able to carry out the procedure. About a month ago, when we had the appointment, they mentioned that there might be openings for surgery in April or May, and that they'd let us know. I've e-mailed, but they haven't been able to give me any sort of detailed response--just the run around. It's doubtful that something as important as approving a heart surgery would be processed very quickly in Japan. If it takes two or three seals of approval every time I get my $10 ferry tickets, I'd imagine that it takes the approval of various doctors at several different levels of authority.

Additionally, Mia will need to visit the hospital twice to have blood taken for use in the operation--the first visit being four weeks before the procedure, and the second two weeks later. They'll also have to insert a catheter to find out if they need to take any other precautions during the surgery. The later we find out, the later the procedure will actually take place. My contract ends on July 28th or so, which is about when we'd like to head back to the 'States. We'd need her to get the procedure done with enough time to get her post-surgery checkups and medication done here in Japan.

The second issue is that Stef is currently due to give birth on June 2nd--less than three months from now. We'd prefer to not have Mia hospitalized while Stef is giving birth. This also means that I'd likely need to be the one to stay with Mia in the hospital in Matsuyama. I'm not looking forward to the idea of being away from Stef while she's close to giving birth. My mom is coming out here around mid May and stay for a few weeks. We're hoping she'll be able to help out a bit with the baby while she's here.

I wasn't sure if I'd have enough vacation time available to take a couple weeks off to be in the hospital with Mia, and my supervisor told me that they wouldn't give me any special paid leave for my daughter's procedure or the birth of my child. According to my contract, it's possible for them to give me paid leave whenever they feel it's appropriate--like they did on the island when Mia was born. However, there's just too much bureaucracy, as well as a general uneasiness for all dealings relating to foreign employees out here. Even though my supervisor would like to help, his supervisors won't let him. I don't blame them--our contract has a lot of clauses that they themselves might not have in theirs, so it probably doesn't seem fair to give special treatment to the foreigners.

In the end, it all might be moot, since I was told by my helpful and supportive supervisor that I'll actually have my PTO clock reset in April, replenishing my balance of 20 days' worth, in addition to the 10 or 12 unused days that I'll be carrying over. When it's all said and done, I'll have enough PTO left that I could take a whole month off if I so needed. That was a pleasant surprise, though I'll be careful not to abuse the privilege of having so much PTO. The last thing I want to do is make life inconvenient for my coworkers just so that I can be comfortable. That said, I'll use what I need to use.

These last few months are going to be pretty busy. We're certainly not taking Mia's condition or the surgery lightly. But we feel good about her getting the procedure here, as long as we can work out the schedule.

Mia herself seems so happy, and she's developing so quickly. She shows an amazing capacity for music and language--she's been singing her ABCs for months, and she's able to string strikingly complex sentences together. She and Kelsey like to make up songs, improvising melodies and creating their own lyrics to narrate what's going on around them--something that I did while was growing up (and still do). Naturally, Mia's also quite a handful, being in the "terrible twos" stage and all. We feel very blessed to have such cute little girls in our family, and look forward to watching both of them grow up together.

Mia's home! 2: Electric Boogaloo

Mia's finally back home from the hospital.

Three weeks ago, we took Mia to her doctor for a fever that had climbed up to nearly 103 degrees and wasn't showing any signs of going away. We had already been to the doctor four times that week for Kelsey, who had broken out in hives and had a swollen upper lip. The doctor suggested we take her to the hospital. We called the branch president of our church, who picked us up and took us to the Imabari prefectural hospital.

After I filled out some forms, a doctor checked Mia and said that she most likely had some sort of bacterial infection. She recommended we admit her to the hospital for a few days so that they could treat her and keep an eye on her. They gave her an IV and prepared a room on the fourth floor. The nurse said that Stefanie would have to stay with Mia at the hospital, sharing a full-size crib.

I planned to visit Stef each day after Kelsey's afternoon nap and bring dinner for all of us to share. When I came back the second day, Mia was grumpy and her fever was persistent. I asked the doctor what he thought, and he said that even though her fever had climbed to 104 and wasn't coming down, she wasn't having any serious problems like convulsions. He still anticipated a quick recovery.

A couple hours after speaking with the doctor, Mia started to have febrile convulsions. I pressed the nurse-call button and asked them to come to the room. When nobody seemed to show up, I ran out to the nurse station to ask them to hurry. The nurse sitting at the desk told me that Mia's nurse had already left for the room. I ran back to the room, and the nurse was looking at Mia, who was sluggish and unresponsive, and still convulsing. She asked how long she had been like that, and I explained that she had just started shaking. She quickly exited the room and was soon joined by Mia's doctor and another nurse, who picked Mia up and whisked her away to another area of the hospital, leaving us behind. I consoled Kelsey as she reached out and cried, "Oh no, baby Mia!" as they disappeared with her little sister. Stef and I looked at each other, and I could tell that we were thinking the same thing.

When Mia was born sixteen weeks premature on a boat, Stef and I both felt a calming assurance that everything would be all right. When they rushed Mia away, neither of us felt that assurance. I embraced Stef and told her how much I loved her, assuring her that we'd make it through everything okay.

I'm not really sure how long Mia was gone. In the 45-120 minutes that she was with the doctors, I had enough time to consider nearly all possible outcomes. All I could do was pray that she'd be all right and that we'd have enough strength to deal with the outcome.

Mia and the doctor's entourage finally returned to the fourth floor, where we were waiting. The doctor said that they had stabilized her with some medicine for the convulsions. Her fever was still high, but she was going to be all right. They moved her into a room that was right across from the nurse station, allowing for constant supervision. Stef slept with Mia that night.

The next day, her fever dipped slightly, but came back in full force. The medicine for the bacterial infection didn't seem to be helping. When a rash broke out on her arm, the doctor realized that we might not be looking at a bacterial infection. It's almost unheard of in kids Mia's age, but it seemed like Mia was suffering from Kawasaki Disease, a condition that targets the heart. As a preemie, Mia already has a heart condition called Atrial Septal Defect, which is, to put it clearly, a hole in her heart. So, we knew from the moment the doctor mulled the Kawasaki diagnosis that we needed to be worried about her heart.

Mia's convulsion medication left her sluggish and unable to eat, so we had to feed her with a medicine dropper, 2 milliliters at a time. She had difficulty swallowing, and so a lot of the milk seemed to be going down the wrong tube. But since I had a way to feed her, I stayed at the hospital so that Stef could have a break.

Along with the fever and rash, Mia had conjunctivitis, cracked lips, and another symptom (that I can't remember), which all together pointed to a diagnosis of Kawasaki Disease. The doctor started administering treatment of antibodies (immunoglobulins), which are generally very effective in treating Kawasaki Disease.

During the first stage of immunoglobulin treatment, Mia wasn't responding very well. The nurses left it up to us to remember when to administer her oral medication. The idea of us forgetting to give her an essential drug frightened me, so I asked them to remind us.

Stef stayed with Mia the next night, and I slept at home with Kelsey. Stef felt guilty about sleeping that night, because she wasn't sure the nurses would always respond promptly to problems. At home, a package from my mom that had a crib sheet had come while I was gone. Without Stef around, a simple thing like seeing the unused crib sheet or Mia's empty jungle bouncer was too much to handle.

The next morning, I went in to the hospital to check on Mia, because Stef was worried about a patch of raised skin above Mia's right ear. She wasn't sure if it was a skin reaction or if it was coming from inside her head. Stef had noticed it when she went to check Mia's temperature, which was up around 104 degrees. Up until that point, there hadn't been much difficulty communicating with the hospital staff. However, when Stef tried to describe her concerns to the nurse, things got a little complicated. I arrived at the hospital and took over, since my Japanese is much better than the nurse's English.

Since Mia is so young, using fever control medication is too risky. The only thing they could do to control her body temperature was put a cold-pack under her neck. When Stef woke up, the cold pack had returned to room temperature. I asked if the cold-pack shouldn't be replaced, and the nurse got a bit defensive. I explained that we were worried about her fever being so high and that we wanted to do everything we could to keep Mia from burning up. After a few failed attempts to explain our worries, the nurse broke down and started crying. She was tired and had forgotten to come and check Mia's temperature and change the ice pack. She felt guilty that we couldn't trust her to watch over Mia while Stef slept. As she sat there with tears streaming down her face, Stef leaned and gave her a hug, which seemed to make her even more uncomfortable. The doctor on duty came in and the nurse calmed down. Soon after, Mia had a new nurse. Her shift might have been over, but I think that they gave her a break from us.

I had a meeting with the doctor, various nurses, and a translator, in which they described Kawasaki Disease and the treatment plan. I only needed the translator for two medical terms--the rest was clear. There were two more stages of immunoglobulin treatments--if one didn't work, they'd step it up to the next level. If the next level wasn't effective, they'd have to try the immunosuppressant Cyclosporin A, which is only administered at the Matsuyama Central Hospital, where Mia spent the first four months of her life.

The thought of having to go back to Matsuyama made me queasy. I was trying to wrap my head around all the information so that I could pass it on to Stef, who was watching Kelsey during the meeting. Just ten minutes after the meeting, while I was in the middle of explaining the plan, the doctor changed his mind. Mia had chest congestion, and the results of her ultrasound had them fearing bronchitis and pneumonia in addition to all the other problems. They said that they needed to transport her right away to the ICU in Matsuyama.

Stef and I took Kelsey to our friend Kris' house to stay for the night. Stef and I rode to Matsuyama with Akiko-san, a lady who works for the International Center in town. We got to the hospital at night and met the huge team of doctors that would be taking care of Mia. We saw a lot of the doctors and nurses who were in the NICU when Mia was there, and they all greeted us and asked how Mia was doing. I stayed the night with Stef at the hospital, and returned to Imabari the next morning to pick Kelsey up.

We were told to expect at least a week for recovery. The doctors said that Mia had stabilized from earlier but that her fever was still high. Over the next few days, her fever would briefly drop, then climb back up to the 102-104 range. I called the missionaries in Matsuyama to see if there was anywhere Kelsey and I could stay for the next few days. The Sumida family, who used to give us a ride to church when we lived in Matsuyama, let us stay there. They have young kids, so they agreed to watch Kelsey the first day while I went to see Mia. They were also kind to prepare meals for us in the morning and evening. We even got to take rice balls that they had made with us for a snack.

After two or three days in Matsuyama, it seemed as though Mia might be getting better. Her temperature was close to normal, so I planned to take Kelsey back home with me to Imabari after visiting Stef and Mia for the day. When I was getting stuff ready early that morning at the Sumida's house, I received a text message from Stef that said, "Maybe you shouldn't go back to Imabari today. Doctors afraid of cardiac failure." I asked the Sumidas if they'd be willing to watch Kelsey again while I went to the hospital. It was impossible to keep my emotions in check as I described the complications. They agreed to watch Kelsey, and I rushed to the train station.

I got there right as both trains were arriving, so I was unable to board. Had it just been my train that was there, I would have had no problem getting onto the platform. But since a train was coming the other way, the railroad gates came down and I was forced to watch the train as it pulled up, waited for people to load, and then pulled away. The gates opened up and I went up to the platform and sat down on the bench, sobbing uncontrollably as I waited for the next train to come. All the people around me avoided making any kind of eye contact with the big, blabbering foreigner.

When I got to the hospital, the doctors handed me a laundry list of all of the problems that Mia was facing. Normally, doctors will explain problems and then go over the possible treatments, phrasing everything in a tactful way so as to give you hope for your child's recovery. With the language barrier, all information given in English was supplied without any such optimism. Just a list of the problems and their ultimate outcomes if treatment is ineffective.

Mia's pericardial effusion (swelling of her heart due to fluid retention) was getting worse, and her heart rate was getting dangerously high. Her fever was back in full force, and the immunoglobulin treatment had stopped having any effect. The doctors explained that they were going to have to begin Cyclosporin treatment, which was risky.

After explaining the treatment plan to me, the doctors huddled around me and asked if there was anything I wanted to "kiku". In Japanese, the word kiku means both to hear and to ask, so I said that I'd like to "kiku" that Mia would get better the next day. The doctors frowned and apologized that it wasn't something that they could say. They patted me on the back and encouraged me to "ganbatte," which roughly translates to hang on or stay strong.

The next day, things got even more complicated. Kelsey's rash, about which we had seen the doctor multiple times, got even worse, and she had a fever of about 101.5 degrees. I had forgotten to bring her hives medication with me to Matsuyama, so her rash wasn't getting any better. She was lively and happy, but her rash, fever and previous mouth-swelling made me worry that she might have Kawasaki disease, too. It's not contagious, so it would have been a huge coincidence. Needless to say, the last thing we wanted was to have to worry about Kelsey, too.

I set an appointment for Kelsey for the next morning. It turned out to just be a bacterial infection that came from the scratching when she had hives. What a relief. We got medicine which we faithfully applied until her rash went away.

Mia's doctors started the Cyclosporin treatment. Brother Sumida came to the hospital and we gave Mia a priesthood blessing right after the new treatment. I gave Stef a blessing, and then rode back to the Sumida family's house. When we got there, I asked if Brother Sumida and his son (the Branch President) would give me a blessing as well. I struggled with not knowing if Mia would get better. All I wanted was to see her smile again. The Sumidas blessed me with faith in the healing power of the priesthood. Having received this blessing, I remembered part of my patriarchal blessing, which discusses my children and the strength of their spirits. I felt strongly that Mia would get better.

The next morning, Mia was doing a bit better. The medication was working well. Her heart had shrunk slightly with the diuretic that she was taking, but was still way too big. Over the next few days, her heart returned to mostly normal size, and her fever completely subsided. She was getting better. She no longer needed to be in the ICU, and they were going to transfer her back to the Imabari prefectural hospital.

When Stef was leaving the hospital, the nurses asked her to pay her hospital bill before leaving, which was 240. They asked if she had the money on her, and she responded incredulously that she didn't. Why would she keep 240 bucks on her in cash? She went down to the ATM with the nurses, who kept asking if she was sure that she didn't have that much on her. Frustrated with the persistent questioning, she pulled out her change purse and said, "This is all I have on me." The nurse swiped the change purse, unzipped it, and pulled out 240 yen, the equivalent of about $2.50. Our hospital bill in Matsuyama wasn't even three dollars.

Back in Imabari, Stef again stayed with Mia at the hospital. The nurse who had broken down was once again on duty, and happy to see Mia in improving condition. The doctor and his staff monitored Mia and performed echocardiograms to monitor her heart, which was steadily improving. They estimated her treatment period at two weeks, but said that it could go quicker.

That was bring-your-daughter-to-work week. I was lucky to not have a grueling work schedule during this time. Kelsey came with me and ran around on the top floor of the city office building while I talked with the other English teachers. As inconvenient this whole experience was, there was no better time for it to happen than Summer break.

After a week in Imabari, Mia was all better and ready to come home. When I asked how we could pay the bill, the nurses said that we wouldn't be receiving one. She's covered 100% under our insurance. Whew.

Not being able to speak to family through all this really stunk. The only way I could keep myself from emotionally falling apart was to stay close to Stef. Stef really missed her mom.

It's great to have Mia back at home, jumping in her bouncer. I've promised myself to be more involved with Mia and to take more pictures and video of my children. Nothing is more important than family.

First week in Imabari

Last night, I put Kelsey down for bed right before running to the store to check for deals. When I got back 20 minutes later, I checked to make sure she had gone to bed, and she was laying in the exact same position, fast asleep. Stef and I watched the last part of a movie, and then got ready for bed. Stef peeked in to check on Kelsey and groaned when she saw Kelsey's face covered in ink. It must have all happened in the 20 minutes that I was gone.

Today, I saw exactly how bad it was. Kelsey drew on her hands and face, and then stuffed eight felt-tipped markers inside her footed pajamas. She had a leaky diaper, and the combination of liquid, ink, and rolling around at night covered her whole body and pajamas in permanent ink. After an hour-and-a-half of scrubbing, she's still got ink all over. At least it's light enough that it shouldn't transfer to other things. And I got most of it off her face.

What a little stinker.

So, as I said before, Mia's home, and we're living in Imabari, where we used to go to church every week before Mia came early. I got transferred early, and I start work here on Monday. It's the beginning of a new school term, so a lot of the teachers will be new. In Japan, government employees transfer to new positions in new places after three years or so. People often have to work away from their families, and some even have to live on islands during the week and travel to see their families on weekends. Most just have to commute every day.

I have five schools that I visit--three elementary schools and two junior high schools. My main mode of transportation is a small ladies' bike with a basket in front. I haven't yet seen my schools, but I know that it takes between twenty-five and forty-five minutes to pedal to my different schools. I'm going to get a lot of exercise.

Mia is doing pretty well, though yesterday she started needing to be held all the time. She gets very upset if she's not lying up against our chest. When she is up against us, she sleeps. Before that, she really liked to sit vertically and just look around. So far we haven't taken a lot of pictures. I bought batteries for our camera, but they weren't even strong enough to keep the camera on for more than 2 seconds. I turned it on, the lens extended, and then the digital display flashed "battery depleted" and it shut off. We got some new batteries yesterday and took a few pictures. Mia wasn't in a picture-taking mood, so I snapped some of Kelsey. Those are the ones that we posted to facebook and Stef's blog.

At Mia's discharge meeting with the doctors, they showed us pictures of her MRI. They said that her left cerebral ventricle is a little larger than the right one, but that it wasn't really anything to worry about. She might experience some difficulty with motor skills, but most of the time, there aren't any problems. We'll be keeping an eye out for the first few years. Everything seems normal so far.

Stef has been getting between five and six hours of broken sleep every night, which is much better than when Kelsey was a newborn. I've been getting about 7 hours of broken sleep. So we're dealing with everything pretty well. It's a lot easier when you're sleeping.

Our place is pretty cozy. It's old and has sparkly corkboard walls and tatami floors, but it feels like home. Kelsey has her own room, we have a small living room with a couch, and we have a bigger kitchen. The fridge was much too small, so we had to buy another small one in order to have enough room for all our food. At Hard-Off (I kid you not), a second-hand shop that sells everything from video games to couches, we found a practically brand new fridge for $150. We also found a baby bath for about eight bucks. To keep Kelsey out of the fridge, we got some locking plastic belt-clips.

Even if our place in Uoshima was slightly larger, this place is much more convenient. We have a big shopping complex called Saty that's five minutes away on foot. Inside the three floor building, there's a nice 100 yen shop, a play area, a nice grocery store with great prices, an arcade, a clothing store, and much more. Within a half-mile or so of our apartment, we've got two or three other grocery stores, a full-size 100 yen shop, a two-story electronics store, Hard-Off, a video rental store, and a full-size McDonald's that serves breakfast.

We're looking forward to things getting back to normal, so we won't be tempted to go to McDonald's. It's hard sometimes to ignore the convenience. And Kelsey loves chicken nuggets. Back in Matsuyama, I took her to McDonald's and got her some nuggets. Stef also took her a few times during her grocery shopping trips. One time, she told Kelsey that she had to get money from the ATM, and then they'd go buy some nuggets. When we tell Kelsey that she's going to get to eat nuggets, she shouts, "Mommy get da money, Kelsey eat nunnets!" The other day, I mentioned that I had to get some money for the next day, and Kelsey Pavlovianly chirped, "Nunnets!" Awesome.

Kelsey's being a good big sister. She's occasionally too rough when she wants to hold or kiss Mia, so we have to keep a close eye on her.

We won't have internet access at home until the 23rd or so. I can walk out into the neighborhood an pick up an unsecured wireless network, which is enough to check e-mail and post to the blog. Last night, I was walking around with the laptop in my hand like a waiter holding a tray, watching the top of the screen to see how strong the connection was, when I walked across the street. Suddenly, I didn't feel the ground under me--I had stepped into the meter-deep gutter. I knew it wouldn't end well, so I tried to protect the computer. It flew up into the air and landed upside-down on my neck, and I grabbed it before it could fall off. I bruised my left leg just above the knee, but was lucky to not have suffered worse.

Things are great here, but I wouldn't recommend walking into meter-deep ditches.

Some video of Mia

Here are a couple videos of Mia from this week. She's getting so big! We haven't gone to the hospital today, but we expect she'll be up to 5 pounds today. Enjoy!

Japan-US Relations

I don't know why I let the differences between Japan and America get to me, but I do. This past weekend, our cell phone service got shut off. When I signed the contract, I asked how I could pay my bill. They asked for my postal bank account number and told me that the bill would automatically come out of my account each month. What they failed to tell me was that automatic payments take two months to establish in Japan.

Up until three days ago, I hadn't received any kind of bill or notice of payment. Every time I checked my account statement, I wondered why the money hadn't yet come out. Three days ago, I got January's bill in the mail. The next day, my service was shut off. When I contacted the phone company today, they agreed to turn on my cell phone service and apologized for any confusion.

I asked about December's bill and wondered why it never came. The bills come pre-printed with the amount paid, so you can't pay two months' bills at a time. They told me that they sent December's bill two weeks ago, and that I had before the end of month to pay or they'd shut the phones off again. I went to the post office to pay January's bill, with the hope that I could pay December's as well. No such luck.

Here in Japan, you have to have a physical copy of a bill if you want to pay it. There is no online bill pay. There is no option to pay by phone with a debit or credit card. You can set up automatic payment from an account, but you have to fill out forms (without making any mistakes). When I asked the post office clerk to help me, we ended up on the phone again with the phone company, verifying exactly what they had already told me. They're resending the bill that never came so that I can have a physical copy to take into an office to pay.

I've always paid my bills early. If I pay them while I still have money, I don't have to worry about not being able to pay my bills later. It's so frustrating that I have to wait weeks or months just to give them money. It's archaic and it's arcane. It's archanic. I just want to pay my bill! The problem is, most people here don't ask questions. They just pay. They fill out the paperwork, wait in the lines, go through the motions, and never demand that things be made easier or more user-friendly. On one hand, I understand that I need to develop more patience for these sorts of things. On the other hand, I wonder why I should have to develop patience for something as trivial as paying a bill. Don't I have more important things to worry about?

When we set up the apartment in Matsuyama, the church helped pay for the rent. We said that we were willing to pay a certain amount, so they told us to transfer the money whenever we could. We now are able to make that transfer, but they won't let me! I called the Branch President, and he said not to worry about it until April. The problem is, the only way I won't stress about outstanding debts and bills is if they've been paid! Now, we'll have an untouchable chunk of money in our account for six weeks, giving us a false sense of financial security. Why can't I just pay it now? Where else in the world would a debtor not be allowed to pay his debts? Consider my mind boggled. So, I'll try to put it out of my mind. But I won't rest easy until our debts are settled.

Mia's getting big--she's out of the incubator now. It's great to see her in her bassinet, without all the tubes and everything. She's up to 4 pounds now, and she's really starting to fill out. I think she looks a lot like Kelsey did when she was born, except that she seems to have lighter hair and blue eyes. We'll be excited if they stay blue.

Yesterday, they told us that she could start breast feeding, but that we had to go out and buy some sterilizing wipes. If they had given us any sort of heads-up, we could have been prepared. Instead, Stef had to fit one more stop into her already packed schedule. Stuff like that could easily be avoided if people were just more willing to communicate with us.

We're anticipating her release from the hospital in three weeks or so. We still don't know where we're going to live. We think we're taking Kitt's place, but nobody's been able to confirm anything. I have yet to be contacted by my new contracting organization. It'd be nice to know where we're going to live so that we can prepare the place. We're even willing to pay the full month's rent, even if we only live there for a week or two in March. From what I gather, I probably won't get a call until the day before I'm supposed to be there. Because moving obviously doesn't take time.

Most Japanese people seem to be unwilling to engage in any sort of speculation. Doctor Nagai said that the Japanese way is to only say what has been confirmed, so as to not create false expectations. In other words, they could lose face if they speculated on something and it turned out to be slightly different. When we inquired about the start date of breast feeding, the doctors tiptoed around our question. Instead of saying something like, "Once she's at a stable weight--say, 1800 grams--and is able to be moved from the incubator to a bassinet, we'll try", they said, "Once she's healthy enough." We don't need exact figures--just estimates that we can use to set realistic expectations and prepare for the future. I'm not going to sue you if things turn out differently. It's okay if they're not sure where they'll place me yet--just tell me that.

In addition to Adult English conversation classes, I've started teaching internet classes once a week. After fixing my boss' computer a couple weeks ago, I'm now seen as the computer whiz on the island. I admit it's a bit tough to motivate myself to help him now, since I've learned that my effort led to him having a computer that's fast enough to load adult web sites. Last week, for the first lesson, two 60-70 year old men came. They were more excited to read haiku and see pictures of themselves on the town website than anything else. That's a lot easier on my conscience than the stuff my boss wanted to look at. I was pretty stressed about the class at first, but it turned out to be pretty relaxed.

Kelsey's struggling with the long distance fathering. It breaks my heart to hear that she cries for me while I'm away, or that she looks for me when she wakes up, only to remember where I am and announce to the world, "Daddy's working. Island." I miss all my girls terribly. But there's only a few more weeks of this. It'll all be over soon.

Kelsey's getting a lot better at speaking. All the cute "one" words (water = wa-one, pillow = pih-one, towel = tow-one) now sound pretty close to how they should. She still says some things in a cute/wrong way, like fishy tatters (instead of fishy crackers). When we would arrive at the store, Jusco, Kelsey used to shout, "Home!" After telling her that Jusco is not home, but a store, she would shake her head and say, "Not home." We told her the store was called Jusco, and she now calls it "Jus-Home." But for the most part, her English is getting really good. When Stef leaves to see Mia, Kelsey says, "Mommy's seeing Mia. Kelsey's playing nurse." When Stef gets back, she says, "Mommy saw Mia." That's pretty advanced stuff.

I mentioned earlier that Kelsey comes up with her own plans, like when we tell her that she has to hold someone's hand and she elects to hold "Kelsey's hand." The other day, in an attempt to get Kelsey ready to go to the hospital, Stef gave her two options: we could take the bikes or take the stroller. Kelsey replied, "No. Take the bus." Her responses blow me away sometimes.

Life is good. We have our sources of stress, but truthfully, we feel pretty blessed. We were interviewed by a camera crew from NHK, the public broadcasting station in Japan that's famous for news coverage. They came to the hospital to ask us some questions about Mia's birth and our hospital experience. It's set to air March 10th. I'll get a copy and post it on YouTube for everyone to see.

New pics of Mia

Here are the most recent pics of Mia (and one of Kelsey playing with the nurse), taken yesterday.

Hisashiburi desu ne! It's been a while.

It's about time for another post. First, I want to update everyone on Mia's situation. Mia's got a hole in her heart which, while not life-threatening, requires her heart to work extra hard in order to pump blood through her body. Whenever she undergoes any kind of stress, her heart rate jumps up into uncomfortable levels. The hole might heal on its own, and it might not. If it doesn't, they may need to perform surgery when she's about 5 or 6 so that she doesn't have heart failure near the age of 30. It's nothing pressing, but we pray it will heal so she can have a healthy, normal life.

They are not yet sure if she'll need laser eye surgery to help the blood vessels expand to the outer edges of her eye. It might take care of itself.

The last time I checked, her weight was up to 1150 grams. That's about 2 1/2 pounds. We were looking forward to the 1600 gram mark, because we figured that we'd be able to start holding her around then. Stef has been anxious to start Kangaroo Care. Baby kangaroos are born quite underdeveloped. They continue their development outside the womb in the pouch, where they get to spend a lot of time skin-to-skin with their mothers. Premature babies are a lot stronger when they get to spend time skin-to-skin with mom. We were told that Mia had to be strong enough to breathe without the help of a respirator.

While she has been strong enough to breathe on her own for a while, her oxygen level in her blood would go down when they took her off the respirator. The nurses have been taking the respirator off for a half-hour at a time to see how she does. She's gotten better and better at keeping her heart rate normal and oxygen saturation levels above 90 (usually around 95) when she's off the respirator. We finally get to see her without a mask every once-in-a-while.

Yesterday, during Sunday School, I got a call from the hospital. I was a bit worried at first, but they were calling to let Stef know that she could start Kangaroo Care. I was so excited to tell her. So, Stef got to hold Mia up against her chest for the first time. For now, she can do that every day from 12:30 until 1. Once Mia's up to about 1600 grams (I believe), she should be strong enough to stay out of the incubator without little electrodes on her back and foot. She's doing very well. We're so grateful for all the prayers on her behalf.

Life has been a whirlwind since Mia was born. I've had piles of forms to fill out and countless meetings with doctors and town hall workers. Every few weeks we meet with my supervisor, the doctors, and a translator from the prefectural office. At first, I was a bit wary of having the prefectural translators help out. After all, the church members had been helpful enough, and the translators might have contributed to us getting kicked out of Grant and Etta's apartment. One of the translators, Murakami-san, was very kind and understanding of our situation, so we decided to go ahead and have him translate for us. That turned out to be a fantastic decision.

Right now, I work during the week and make the 4-5 hour journey to Matsuyama every Friday night to be with Stef and Kelsey. My board of education has shuffled my schedule so that I can work Tuesday through Friday and be with the fam until Monday afternoon. My mom's been with Stef for about 3 weeks, and that's lightened Stef's load considerably on the days I'm not there. We still miss each other terribly, but at least she's got someone to keep her company during the week. Mom goes home in a little over a week, so things are going to get a bit tougher for Stef.

Before Mia was born, we visited Kitt, one of the JETs in Imabari (where we went to church before we moved to Matsuyama). We commented on how convenient it was and how much easier life would be if we were there. Stefanie and I were very worried about bringing Mia back to Uoshima. Since Uoshima is so scarily inconvenient for newborns, we were considering moving Stef, Mia, and Kelsey to Imabari after Mia gets released from the hospital. I would go to Imabari on weekends after working in Uoshima all week. In the meantime, we'd see about getting transferred to a place with a hospital. The JET Program is usually pretty strict about transfers. It's difficult to get a transfer, and we'd have to wait until the end of July to do so. We were gearing up for some pretty difficult times the next few months.

Then Murakami-san mentioned something. He asked us if we were considering a transfer. We told him that we wanted to be closer to a hospital, but that we had heard about JET's strict transfer policy. We asked if it was possible, and he said that transfers were approved in extreme cases, and that he was the one in charge of transfers in Ehime. We told him that we'd love him to pursue a transfer, if possible. He said that he couldn't promise anything, and would get back to us when he knew for sure.

Stef and I went on with life, praying that things would work out. One day, one of my JET friends sent me an instant message, mentioning Kitt wasn't renewing her contract. When I e-mailed Kitt to find out why, she told me that she was leaving right away. Even though I felt bad that her Japan experience didn't work out, I was excited about an opening for next year in Imabari.

Then, one day, my boss asked me if I would be willing to move to Imabari in April if the opportunity presented itself. Murakami-san had contacted my boss and asked if I would be willing to take Kitt's spot. I obviously approved of the move, but they told me not to get my hopes up. Uoshima paid a lot of money for me to come there, and it wasn't likely that they'd just let me go. It also wasn't a given that Imabari would take me. I mentioned all this to Kitt, and she told me that she suspected that something was up. Her boss was okay with her leaving mid-year, which is almost unheard of. I got excited. But weeks passed, and every time I asked my boss for more information, he told me that he hadn't heard anything and that it was bad to speculate.

We set up a meeting with the doctors, Murakami-san, and my boss, to discuss Mia's health. After going through the details of Mia's health, the doctors left and we had some time to ask Murakami-san some questions. Stef expressed her concern about having to care for Mia and Kelsey on Uoshima, and asked Murakami-san if he had heard anything about our transfer. He said that they were currently monitoring the surrounding areas for openings, and that they would let us know if anything came up. He asked if we had a preference between Imabari and Matsuyama. We mentioned that we had been told that it was bad to specify a preference, and he asked us, unofficially, what our preference was. I suspected that they were already trying to set something up with Imabari, so I mentioned that we'd prefer to go there, since we know people and rent is cheaper. After that, he didn't mention Matsuyama again. But he had plenty of questions about us living in Imabari. It was clear that, while he couldn't tell us anything until it was official, they were trying to move us there.

This past week, I had a JET seminar in Matsuyama with other JETs and a handful of native Japanese teachers from all over Ehime. During one of the workshops, a Japanese man came up to me and asked me if I was the one that was going to move to Imabari and start working at his school. When I said that I hadn't heard anything official, he backpedaled. Realizing he shouldn't have said anything, he said that he hoped that it would work out, and said that it was just between the two of us. Finally, unofficial confirmation! Or so I thought.

I called my boss and mentioned the run-in, and asked if he'd heard anything. He scolded me for talking about it, and said that he still hadn't heard anything. A few days later, my boss called to tell me that both boards of education had approved the transfer and that I would transfer in April, not July. The Japanese school year starts in April and goes until March. I'll finish out the school year here in Uoshima, and then we'll move to Imabari. We think we'll be taking Kitt's place in her apartment, but we're not yet sure.

We're very excited. Even though rent's more expensive in Imabari than in Uoshima, we won't have to spend 400 bucks a month on travel for church. Stef will have a lot more things to do with Kelsey and Mia, and we'll be closer to a hospital. We can't help but thank God for the way He's taken care of us through all this. We find it strangely coincidental that Kitt is leaving now, and that she happens to live in a place where we openly longed to live. Things will still be tough for the next couple months, but we're so hopeful for the future and what it brings.

Kelsey is really starting to become a handful. She is incredibly bold (to the point of our heads a-sploding). She doesn't listen to us all the time, and can throw a tantrum with the best of them. But she's also really cute. When we're walking with her and want to keep her close, we ask her to hold either Mommy's hand or Daddy's hand. She puts one hand over the other and says, "Kelsey's hand." She likes to announce to the world what's going on around her. For example, when Stef starts pumping milk, Kelsey shouts, "Mommy! Pumping!" And just in case we didn't know, she adds, "Kelsey! No pumping! Daddy! No pumping! Gamma! No pumping!" When Stef finishes pumping, it's, "Mommy! All done! Pumping!" Grandma says that she's going to be an announcer when she grows up. I figure she'll be a sportscaster for weight lifting competitions--"Krzyzvsky! All done! Pumping! Iron!"

To finish up, here's a little video of her in Stef's boots.

A little late, but still

With all the commotion, I haven't yet taken the time to write my own thoughts about Mia and how she came to us. It's been almost three weeks since she was born. Dad suggested that I should do it before I forget the feelings that I had that day.

Saturday night, I had the hardest time sleeping. I spent most of the night restless in bed, angry that I wasn't sleeping. In all, I probably got somewhere between two and three hours of sleep Saturday night.

When Stef got up for church early Sunday morning, she asked me how I felt. Since I hadn't slept, I told her that I should probably stay home and rest. While I felt guilty for not going to church (I hadn't missed church since I got to Japan), I just didn't have the energy to make the voyage. So, I stayed home with Kelsey and gave Stef a day to herself.

Right after Stef left, Kelsey was up for the day. Since I was taking care of her, I didn't get to rest during the day. In Imabari, some of the church members gave Stef some interesting Japanese maternity clothing. Sister Ochi gave Stef a ride to the port after church, but stopped at the 100 Yen shop so that Stef could get some goodies to send home to family for Christmas. Stef said that she could walk to the port from the 100 Yen shop, but Sister Ochi had a strong feeling that she shouldn't let her walk. Stef came home at a quarter-to-5 and showed me all the stuff she had picked up in Imabari. She was so glad to have gotten a day to herself for once.

At around 7, we tried to put Kelsey to bed, but she wouldn't have it. Stef was laying in bed, feeling a bit of discomfort, while I tried to soothe Kelsey. I read her various books, rubbed her face, tucked her in, and read more books, but Kelsey seemed distraught and wouldn't go to bed. I closed her door and went back to our room. When 8:30 rolled around and Kelsey still hadn't fallen asleep, something told me to be prepared for a very long night.

Stef's discomfort got worse, and she said that they reminded her of Braxton Hicks contractions, which she shouldn't be having at that stage of the pregnancy. She was very worried, so I gave her a blessing. During the blessing, I wanted to tell her that she would take the baby full-term, but I couldn't bring myself to do it. I felt like I was being told specifically not to say that. I blessed her so that she and the baby inside would both be strong. We decided we'd call the doctor the next morning and travel to Imabari to see him. The contractions went away soon after, and we went to bed at around 8:45.

At 11PM, Stef woke me up and asked me to time something. I was in a deep sleep, so I didn't really have any idea what was going on. I stumbled around to find some kind of clock, and then timed her pains. Stef was very worried, so I said I'd get the island doctor and call a rescue boat to take us to Imabari. When I got to the doctor's house, there was no response for about 3 or 4 minutes. When the doctor finally came to the door, I told her that Stef was having a lot of pain and that we needed to call a boat. She ran to the clinic to get a stethoscope, and then we hurried back to our house.

Stef called her mom and told her what was going on, and asked her to pray for us. I called my mom and did the same. We also called some friends in Imabari to let them know we were coming and might need their help. The doctor called the rescue boat at about 11:40 or so, but said it wouldn't get to our island until about 12:20. Stef's pains got progressively worse. At this point, I had no idea if her pains were labor contractions or some other serious problem. Either way, I knew we had to get to the hospital quickly. The doctor asked me for some string, and I ran upstairs to get a ball of twine that was left by my predecessor. I gave her the twine and she used it to hang an IV for Stef from the curtain rod.

I started packing a backpack with all the stuff we would need for the next day, and decided we'd get Kelsey up when the boat came. I knew that I needed to keep her calm, and that she'd be a source of more stress for Stef if she was upset. My supervisor, Tanago-san, showed up to see if he could help. Stef went into the bathroom while I was scrambling to get everything ready, and then I heard her cry out hauntingly, "Jesse, I'm bleeding!" I raced to the bathroom, where Stef was clearly distraught at the sight of blood. I knew that something was seriously wrong, but really had no idea what it was. I told her that everything was going to be all right and gave her a blessing right there. In the blessing, I said that if the baby did come early that she would know what to do. I blessed her body with strength and blessed the baby so that if she did come she'd be able to be strong and make it to the hospital.

I finished preparations while we waited for the boat to come. At about 12:20, when it finally came, I put on my big backpack, woke Kelsey up, folded her porta-crib up and took her out to the docks, holding the crib in one hand and Kelsey in the other. The paramedics rushed by with a stretcher, and I walked down to the emergency boat. I told Kelsey that we were going to go for a ride in a boat, and that mommy was going to be laying in a bed.

The boat was pretty small--not much bigger than a pleasure boat in America. It had a rectangular cabin with a bench on the left side, and just enough room for a stretcher on the right. Between the bench and the stretcher area, there was about a foot or two of aisle space for the medics to get back and forth. It wasn't much bigger than the inside of an ambulance.

I waited in the boat with Kelsey for what seemed like forever while the medics got Stef in the stretcher. When they finally returned with Stef, I held Kelsey close to my chest and tried to keep her distracted. The island doctor decided to ride with us on the boat. We set off for Imabari, and I overheard the medics say that we were going to arrive at 1:30, which was about 50 minutes later. I repeatedly prayed that Stef and the baby would be okay, and that we'd be able to make it to the hospital.

Stef's pains got progressively worse. Since the medics needed to walk through the small aisle between me and Stef, I couldn't do much to help her but keep Kelsey calm. I tried to hold her hand every now and then and let her know that I was there and that everything would be fine. As the pains got worse, though, Stef started crying out in agony. Kelsey got a bit upset as she saw her mom in pain. I did my best to distract her and assure her that everything would be okay. Kelsey did surprisingly well. I watched every minute tick by on the clock. 1:30 could not come soon enough.

The medics looked nervous, and I'm sure the fact that they spoke no English had something to do with it. Luckily, the doctor spoke English and was able to help Stef and give direction to the medics. She held Stef's hand as the pain worsened. At this point, I still wasn't sure what was going on. I knew that Stef had pain and that she was bleeding, but not much else.

Suddenly, Stef's water broke. I knew that the water breaking meant that the baby would be coming within the next few hours at most, but I hoped that we'd be able to make it to the hospital to deliver the baby. At 12:55, I turned to Kelsey to comfort her as Stef cried out in pain, when, out of the corner of my eye, I saw a baby. I didn't know that the baby was coming, or that Stef was even pushing. She had mentioned that she felt the need to push, but I assumed it would take a while. Little Mia was motionless and purple, laying on Stef's abdomen while the doctor got some equipment ready.

I prayed that Mia would be all right. Stef and I had talked about different scenarios with the birth, and we had said that the worst case would be having the baby on a rescue boat in the middle of the ocean. It turned out that we hadn't even factored pre-term labor into the equation, and Stef was only 26 weeks pregnant. When I looked at Stef to see how she was taking everything, she had a big smile on her face as she looked down at her tiny little baby.

The doctor put a tube in Mia's nose and throat to suction out moisture, and then she started moving. Stef held her close as gently as she could, and the medics got out a an oxygen mask and set it over her head. Her whole little head fit inside the bulging, rounded part of the mask, and Stef held the mask in place. As Mia did her best to breathe, I prayed continually that we'd be able to make it to the hospital to get her the care she needed. Stef talked to Mia and told her to stay strong and hold on, and that we loved her so much. Mia tried to cry, but the only sound her tiny lungs could muster was a kitten-like squeak.

Even though we were a half-hour away from Imabari, and she was tiny, we didn't panic. I had a calm assurance in my heart that everything was going to be all right. Still, I watched every minute tick away until we finally arrived in Imabari. The doctor and our friend were both waiting at the port as we got off the boat. I asked the island doctor if she'd ever delivered a baby, and she answered that she hadn't. The medics also had never delivered a baby. It was a miracle that everything went as well as it did on the boat.

The doctor told me that they planned on taking us all to the hospital in Imabari to make sure that the baby was stable enough to be transported by ambulance to Matsuyama. We traveled together to the hospital in an ambulance. I had to fill out new patient paperwork at the Imabari hospital while they took Mia off into another room. Stef hung around for a while, but then she was transported to the clinic where she had originally planned on having the baby.

The doctors checked Mia and decided that she was strong enough to go in an ambulance to the Ehime Prefectural Hospital's Neonatal Intensive Care Unit (in Matsuyama), which was about an hour and a half away from Imabari. They told me that I should go there as soon as possible. I was willing to go immediately, but our friends were tired and were our only mode of transportation. They told me I should take the first train in the morning, and rest from 4AM to 6:30AM with Stef. I wasn't able to sleep.

I didn't have a jacket, and I was disheveled, but I walked in the cold to the train station to take the first speedy train to Matsuyama. I waited in line for the fast train to come, but it never did. There had been snow at one of the stops, so they canceled the train. I went from being first in line for the fast train to last in line for the slow train. The slow train took over an hour and a half, instead of 35 minutes. I took a taxi to the hospital and went to see Mia. With my Japanese and the doctors' English, we eventually communicated enough to where I understood Mia's condition. I stayed with Mia for a bit, then grabbed a taxi back to the train station.

After taking a fast train back to Imabari (it was back up and running), I ran to the port and hopped on the first of two boats to head back to Uoshima to pick up some stuff we'd need in the next few days. After changing boats in Yuge, the Uoshima ferry arrived at our island at about 4:40. Our grocery delivery came in on the same boat. I ran home, threw some stuff in a suitcase and, with the help of my supervisor, unloaded the groceries into the fridge. I got back on a boat at 5:20 and headed back for Imabari.

In less than twenty four hours, I watched my wife give birth on a small boat in the middle of nowhere, and traveled from Uoshima to Imabari, to Matsuyama, back to Imabari, back to Uoshima, and back again to Imabari. It was, by far, the most eventful day of my life.

At one point, our friend John, who was waiting at the hospital in Imabari with us while we waited to find out if Mia was okay to be transported by ambulance, asked me how I wasn't freaking out. He said that if he were in my shoes, he would be yelling and screaming and demanding answers. I told him that even though everything was extremely new and disorienting, I knew that everything was going to be okay. Throughout all this, I was able to keep my sense of humor. I firmly believe that I drew strength from the many family members who were praying for us back in America.


Thanks to everybody who's prayed for us or sent us good thoughts and vibes. We really appreciate it. I'll give you an in-depth update of our situation in the next couple days.

Update

First, we just want to thank everybody for the kind thoughts, words and prayers. We have felt uplifted.

Mia is getting stronger every day. It's still a long uphill battle, but we feel grateful that she's doing as well as she is. Being 14 weeks premature, her heart, lungs, skin, and other vital organs were all underdeveloped when she was born. Because her heart was underdeveloped, one of its arteries wasn't quite closed up enough to maintain steady blood pressure without heart medication. Her artery has started to close, and they no longer have to give her the heart medicine. She still needs to be sedated to keep her heart rate and blood pressure normal, because she likes to move around so much. She has a bacterial infection that she's receiving treatment for, and she's getting better each day. They had to give her oxygenation and electrical respiratory stimulation so that she could breathe normally. They no longer have to give her the oxygenation. Her jaundiced skin is improving every day.

She was improving so much that they decided to try to give her some of her mom's milk through a feeding tube. She couldn't digest it yet so they had to stop, but they tried again last night. We still haven't talked to the doctors, so we're not sure if she was able to digest it this time.

Stef found an apartment in Matsuyama that's about 20 minutes away from the hospital on foot. We can't move in until December 18th, but we lucked out and got an offer from a Canadian couple to stay in their apartment while they're on vacation. It's about 5 minutes from the hospital, so we're going to stay there until we can switch over to our new apartment.

The new apartment is very expensive, but the church is helping to pay for it since we can't afford it. We hope to only have to be there for three months. It's a one-room apartment that's pretty tiny, but it's furnished and utilities are included. We can even get internet, so Stef and I will be able to Skype once I go back to work on the island. It's a huge blessing.

I went back to the island two days ago to pack some more suitcases. I was worried about having enough vacation time to cover the days I would miss and still have some for early next year (so that Stef wouldn't be alone all week in Matsuyama). My boss told me that they were giving me the rest of December (until January 5th) off, paid--and I didn't have to use my vacation time. When I got home after hearing this, I fell to my knees and wept. I thanked my heavenly father for all the help. I have enough vacation time to take every Monday off for the next few months. I plan on working Tuesday through Friday, then making the 4+ hour trek to Matsuyama to be with Stef for the weekend. I'll go back to Uoshima every Monday in the afternoon.

Before we could leave the clinic where Stef was staying, we had to pay our hospital bills. I wasn't sure what I was paying for, but emptied out our accounts to pay the doctors. When I showed my receipt to the people at the Uoshima Town Hall, they said that I had been wrongly charged for the delivery of the baby. The doctor didn't even deliver the baby, yet I paid him $1600 for delivery alone. I still have to pay the island doctor for the delivery of the baby (only $250, but still, I shouldn't have to double-pay). The island doctor is outraged and is reporting him to some kind of better-business-bureau-type-thing. We're hoping that we will get our money back.

Insurance doesn't cover childbirth in Japan, but the city will pay you a lump sum of cash that usually covers the expenses of childbirth. In Imabari, you can walk out of the city office with cash the day you register the birth, but on my island you have to wait 1-2 months to get it. We'll be a bit strapped for cash until then, so it would be really nice to get that $1600 chunk back. They want Stef to open a bank account, but I don't know how we'll be able to split our money up into two accounts. We have a lot to think about.

I've been filling loads of paperwork out in order to get insurance for little Mia. Since she was so premature, most of the costs will be covered by insurance. We still have some costs, but we're much less worried about being able to afford the medical care than we were at first.

I was told to go the the embassy as soon as I could to register Mia's birth and get her a passport. When I contacted the embassy, they told me that the whole family had to be present, including Mia. There are no exceptions. We won't be able to go until she's healthy enough to leave the hospital. After stressing about it a bit, I've decided that it's not that big of a deal. She was born this year, so we can still claim her on our US taxes even if we don't have a social security number or passport for her. Rest assured that I'll be filing my tax return as soon as possible next year. We'll need that money to be able to afford a family trip to Tokyo or Osaka.

We finally had to buckle down and buy cell phones. We didn't need them on the island, but we'll need them out here. It's free to receive cell phone calls in Japan, and our family plan allows us to call each other whenever we need to for free. Calls to the same network are free from 1AM to 9PM (almost the opposite of the U.S.), but calls to other networks and in-network calls in from 9PM to 1AM cost about 42 cents a minute. I had to purchase the phones with cash--the plans where you get a free phone cost much more per month than the one we signed up for. I spent a total of 3-4 hours (in three separate trips) at the phone store trying to communicate with the salesman (without a translator) and understand what I was buying. I hope I got it right.

It's nice to have phones, even if we just use them to talk to each other and receive calls. My package included $60 of prepaid calls, so I have two SIM cards with different phone numbers. When I need to make calls, I pop in the pre-paid card. Once I'm done calling, I put the regular SIM card in. It's a bit of a hassle, but it will save me a bit of money over the next couple months.

Stef's dad is flying out here tomorrow to be with us and help with Kelsey. We're extremely excited for him to come, even if the apartment will be a bit of a tight fit. Hopefully we'll be able to spend time outside of the house.

I'm going to miss our house on Uoshima ('til I go back). We have a whole lot of food there that needs to come out with us. I'm not sure how I'm going to transport it to Matsuyama without it going bad. We may have to give some of it away and just eat (Ha!) the loss.

Again, thanks to everyone for your support. We feel so blessed to have such wonderful family and friends. It really helps lighten the load.

Mia Noele Stout

For those who don't know, Stef gave birth to Mia Noele Stout 2 days ago on a rescue boat. She's 14 weeks premature, so we're praying for her to continue developing. For a more detailed account of the situation from Stef's perspective, go to jessenstef.spaces.live.com. We appreciate all the prayers on Mia's and our behalf. We need them. If you click on the slideshow, you can get a better look at the pictures.