Little Cry Baby

Hi all,

Poor little Isaac has been kind of a little cry baby. Before Isaac's heart surgery, I asked the doctors what kind of pain management they would give him post surgery. The doctors looked really surprised that I would ask such a question and claimed that babies this young do not feel pain. I did not really believe them then and totally don't believe them now. Poor little Isaac has been crying and fussing ever since the heart surgery and today he was frowning a lot. Now he does look very cute frowning but it still means he is not happy. I was able to calm him down and help him fall asleep by patting him on his head for a while. He seemed to like that a lot because I actually saw a fleeting smile from him when I was doing it and I haven't seen him smiled for ages!!!

In any case, Isaac was still pretty tired yesterday but looked a little better today. His breathing is slowly returning to where he was before the eye surgery but he is still not there completely. Unfortunately, his CRP/infections score came back a little higher today than yesterday - its 1.5 today. So the doctor changed the type of antibiotics they are giving him again. The nurse also said that he has more phlegm lately and its a bit yellow in color so please pray that the new antibiotics will wipe out this infection ASAP.

Isaac is now on 21% oxygen being ventilated at 15 cycles a minute. He did crash once pretty badly today where his heartbeat rate also dropped quite a bit. But I think he is slowly recovering from the eye surgery. I am a bit surprised that the eye surgery seems to be taking so much more of a toll on him but I think its because that was the second surgery in a week for poor little Isaac.

I haven't reported his weight for a while. They are now weighing him everyday. His weight today was 1,240.

The doctor told me a few days ago that if Isaac's breathing can stay stable for a while on 10 cycles a minute, they will attempt to take our the ventilator tube. Please pray for this to happen soon and when it does, Isaac is able to breathe on his own and breathe well.

Please also continue to pray that the laser eye surgery on Wednesday was effective in correcting his ROP. I really, really hope he doesn't have to get another surgery as it will take even more of a toll on him.







Please also pray for me as I have had some minor health issues lately that I think are stress and exhaustion related. Please also pray for my milk supply as it seems to be decreasing these days. Thanks!

Have a good weekend!

Sonia

Post Surgery Prayer Requests

Dear all,

I got to the hospital at 2:30 pm to talk to Isaac's neonatologist Dr. Ishii and then talked to the eye surgeon at 3 pm. Isaac's eye surgery began at around 3:50 pm and took about 2 hours. I learned quite a few things from talking to the eye surgeon today. First let me step back and very briefly explain what ROP is. ROP is basically abnormal growth of blood vessels in the retina. Blood vessels are supposed to grow along the wall of the retina but with ROP, it keeps growing and grows inwards towards the center of the eyes. These blood vessels are very fragile and break very easily which forms scars, creating a bulge on the wall of the retina. The bulge creates tension and may force force the retina to ultimately detach in the worse case scenario. What the laser surgery does is to burn off the blood vessels on the edge of the retina to try to stop the abnormal growth. Apparently, laser surgery may not stop ROP in 10-20% of the cases and if it doesn't stop, the eye surgeon may try to do up to 2 more laser surgeries before moving on to an even more invasive eye surgery.

In any case, we won't know how effective the laser surgery was until next week when the eye surgeon checks Isaac's eyes again. Basically he needs to see that the bulge has gone down. If it stays the same size or gets bigger, then the surgery was not effective.

Therefore, please pray for the following:

1. that the surgery was effective to stop the abnormal growth of blood vessels within Isaac's retina, that Isaac's ROP will completely heal and that there is no need for additional laser surgeries

2. that Isaac's beautiful eyes will not be affected by potential side effects from ROP and laser surgery such as short sightedness, crossed eyes and lazy eyes

3. the laser surgery is supposed to have destroyed part of Isaac's peripheral vision, so please pray that the damage to Isaac's peripheral vision is minimal and for his peripheral vision to be miraculously healed

4. I really love Isaac's eyes - they are so beautiful - please pray that if its in God's will that Isaac will be able to see clearly without the need of really thick glasses

Isaac was completely exhausted after the surgery. Please also pray for his quick recovery from the trauma of having 2 surgeries and general anesthesia in a week. It breaks my heart to see him suffering so.

Here are a few pictures from before his surgery today.





Thanks for all of your prayers,

Sonia

Another Surgery for Isaac Tomorrow

**I am a bit unsure about the start time after talking to the nurse (but the doctor wasn't there tonight. It might start as early as 4:30 pm Tokyo time? I am not completely sure.**

Dear all,

I just got a call from Isaac's doctor saying that the eye doctor checked Isaac's ROP (retinopathy of prematurity) and it has now worsened from Stage 2 to Stage 3. They would like to perform laser eye surgery on him tomorrow evening Tokyo time before his eyes get worse. The surgery is much more straight forward and less risky than his heart surgery last Thursday but they will put him under general anesthesia so that he wouldn't be able to move during the surgery.

Please pray for a smooth surgery and that the surgery will successfully treat his ROP. Jong is not here and I don't have the wireless connection so I will need to update after I get home late tomorrow night.

The surgery will probably start around 5:30 pm to 6:00 pm Tokyo time, which is 4:30 pm to 5:00 pm Hong Kong time, 4:30 am to 5:00 am EST and 6:30 pm to 7:00 pm Sydney time. It will take around 2 hours (1 hour for each eye).

Apart from his eye condition, Isaac has been doing very well after his surgery - thanks to all of your prayers.

In Christ,

Sonia

A few pictures from last night

Good morning! I just wanted a few pictures from my visit from last night. I forgot to mention that when Jong and I went to visit Isaac on Sunday before Jong went to the airport, they had just changed Isaac's dressing and only had a clear tape on his incision and Isaac was on his tummy. Yikes!!! I don't know where is incision started from the front of his body, but it ran along his left side all the way to the middle of his back (its a horizontal cut along his side and back). The surgeon did some kind of inside stitching so the sutures do not show and he said later on there won't be a scar - we will see about that. Jong thinks that if Isaac does end up with a scar, it could be some kind of chick magnet when our little boy grows up. I think that is hilarious. ^_^

In any case here are the pictures from last night where they have covered up the scar with white gauze again (don't think my mom would be able to sleep if she saw the pictures from Sunday). ^_^



God bless,

Sonia

Mr. Sugoi Wanpaku

So I arrived at NICU today and the nurses greeted me by telling how Isaac has not only been wanpaku (Japanese for naughty), he has been sugoi wanpaku (very, very naughty)!!!

On Saturday, when he threw his little tanrtrums (not that the tantrums were little but that he is such a little guy throwing tantrums ^_^), he had two IVs in him, one on each arm. I think he really didn't like that - may be part of the reason why he threw his tantrums. Then when we went yesterday, he had one IV in but this time on his foot. Well, today, the IV got changed again, probaby because he has been so wanpaku. Its back to one of his arms. He apparently has been moving around a lot.

Isaac was doing good today. His CRP levels went down from yesterday. About 2.2 (I forgot exactly). His oxygen mix is now only 23% and they are giving him 30 cycles a minute and his oxygen saturation levels were still good.

He was wide awake when I got there. His eyes were wide open and he was looking all around him for quite a while. His eyes are so beautiful! I then brushed his head and sang to him until he fell asleep.

Jong is away travelling on business again and will be gone for about 10 days. I can't imagine not seeing Isaac for more than 1 day! Let alone 10!!

This week is a bit sad for us. Our closest friends in Tokyo, Song and Dok and their children Mina and Junoh will be moving to Hong Kong on Thursday. They have been such a great support for us. Song came out to the hospital to cry with us the night after Isaac and Rachel were born and Rachel went to heaven. Song was also the one who came to surprise me to give me a ride home from the hospital during Jong's first trip away when I was very exhausted. The list can keep going on. For those of you in Hong Kong and attend ECC (Evangelical Community Church for those who are not in Hong Kong), please warmly welcome Song, Dok, Mina and Junoh if you meet them. I think they will try out ECC. ^_^

By the way, did you guys (in ECC) know that I was part of ECC when it first got started and was quite involved in Harvesters (ECC's youth group for those who are not part of ECC) way back when??? (I won't tell you guys how old I was then because you can then date me.)

In any case, I am going to try to post pictures a little later. If I fall asleep, I will try to do so in the morning!

Sonia

Little Isaac threw a tantrum!

Hi all,

Isaac looked more energetic today than yesterday. When we arrived, we learned that his CRP/infectious score increased quite a bit to 5.8. The nurse said that they changed the type of anti-biotics. Please pray that the new anti-biotics will work quickly and effectively. The good news is he didn't have a fever and his heatbeat rate was normal and not elevated.

The nurse told us that he got very angry earlier on and cried and cried, but he was sleeping when we arrived. However, he woke up the second half of our visit. At first he was just kind of looking around and then he got really mad at something again and boy could our little one throw a tantrum. He cried and cried (even though he still can't make any noise because of the ventilator) and kicked and kicked and flailed his arms around. I was pumping when this happened so Jong tried his best to calm him down. It was weird because I felt kind of encouraged that he had so much energy to move around that much plus his oxygen saturation levels didn't crash much during his tantrum (it used to crash whenever he moved around). However, we were also a little worried that him moving around so much might cause tearing at his wounds. In any case, the funny thing is right before our visit earlier this morning, I was just talking to Jong and saying how little Isaac is so sweet and he never seems to complain and get upset. I guess Isaac was set out to prove me wrong! ^_^ He was so cute even when he was so mad! ^_^

Anyway, good night everyone!

Sonia

Surgery Day +1

Dear all,

I really wanted to post last night because I know some of you may really want to know how little Isaac is doing after his surgery. But I fell asleep with my laptop on my chest while I was downloading Isaac's pictures.

Well, our little fighter was still doing pretty good last night. But I kind of had a bit of a panic attack earlier on in the day. I called the hospital at 11 am to find out how our little boy was doing but the nurse wouldn't tell me anything and asked me to call back at 2 pm when Dr. Ishii is in. That made me real nervous because I started thinking that something bad has happened to Isaac because the nurses usually don't want to talk to me when something bad happened and would want me to talk to the doctor instead (that was what happened when they discovered Isaac's reopened PDA). In any case, those 3 hours were tough to get through!

Well, I called back at 2 pm and talked to Dr. Ishii and learned that Isaac was basically fine. Dr. Ishii did mention 2 things - one was that the CO2 level in Isaac's blood was a little high. He thought this was because it will take a few days for his blood circulation to get back to normal as his blood circulation is kind of rerouting after his PDA was closed. So less blood is going into his oxygen. He didn't think it was a big problem and that things will improve in a few days. In the meantime, they increased the no. of cycles they ventilate air into Isaac to 45 times per minute. Isaac's CRP/infectious score was also a little high yesterday - at 3.8. But Dr. Ishii said this is typical post surgery and they will continue to give him antibiotics. I am hoping that Isaac's CRP score will decrease today.

Other than that, Isaac's blood pressure was good and he was able to digest all the milk being fed to him and he is back to getting 17 ml per feeding!

Isaac looked pretty good last night. He was sleeping well and looked comfortable. He even woke up for a little while and moved around quite a bit. His oxygen saturation level still goes down when he moves but we are really hoping that we will see a big improvement in that in a few days. He has to lie face up because he has 2 IVs in, one in each arm. In any case, we saw him trying to lift his butt a bit lying face up! Naughty boy because that definitely caused his oxygen saturation levels to crash a little bit. ^_^

Here are some pictures from last night. The big bandage on his side is where the incision was. Oh the white strip in the third pic is just a reflection from the fluorescent light off his incubator. I forgot to mention that they moved him back into his incubator from the open bed yesterday morning so we didn't get to take pictures of him close up.




Thanks again for all your prayers!

Sonia

The Longer Version

Dear all,

We just got home from the hospital a little while ago - we are both very exhausted as we both didn't sleep much last night but Jong and I are really praising and thanking God.

We arrived at the hospital at 8:30 am as instructed and were very pleasantly surprised when they said we could go straight into NICU to be with Isaac. They allowed us to touch and talk to Isaac as they prepared Isaac for the surgery. Isaac looked really good this morning before he went into surgery so both Jong and I felt quite encouraged. At around 10:00 am or so, with what must have been most of the surgery team looking on, the nurse moved Isaac out of his incubator, weighed him (he weighed 1,184 grams right before his surgery - almost at the 1.2 kgs Dr. Ishii was hoping for) and then put him into the transporter incubator. We then walked with the medical team and saw Isaac off as they pushed him down the corridor to the surgery room. Dr. Ozawa, the heart surgeon, shook both Jong's and my hands promising to do his best for our precious boy before going. Jong and I got a bit teary eyed watching our boy go off to his surgery.

As Jong and I sat down outside of NICU to wait while Isaac was in surgery, we really did feel a lot of peace. We prayed together and I then made Jong take a nap as he couldn't sleep last night and I want him to be able to spend some quality time with Isaac in the afternoon (this was probably when Jong dreamt about the amazing clam ^_^).

In any case, towards the end of Isaac's surgery, the head nurse came out and told us they were almost finished with a smile - so we took that as a good sign. We were later told Isaac's actual surgery took 1.5 hours but the entire procedure started from around 10:10 am to about 1:30 to 2:00 pm. When we were finally allowed back into NICU to see our boy, we were pleasantly surprised as he looked better than we thought he would and his eyes were already opened. He was also placed on a special open bed under a radiant warmer instead of inside his incubator to allow the doctors and nurses easier access to take care of him. Today was the first time Jong and I saw our baby boy outside his incubator and we got to spend the most time we have ever had next to his open bed!! ^_^

Isaac's surgeon Dr. Ozawa told us that Isaac's PDA turned out to be bigger than we had all thought - it was bigger than 3 mm, almost the same size as his aorta. Fortunately, Dr. Ozawa was able to successfully ligate the PDA. He also mentioned that Isaac's lungs were really red which meant there were way too much blood flow going into lungs due to his large PDA and it was making it a lot more difficult for him to breathe. So we are very thankful that Isaac's surgery happened now rather than later. Dr. Ozawa said that the major concern now is whether Isaac's sutures may tear as his skin is so thin and the cut is quite large for Isaac's size (about 4-5 cm horizontally on his left side). So please pray that Isaac's wound will heal quickly without complications. Dr. Ozawa also said that it will take a few days to see the effects of the surgery including both good (e.g. improvement of his lung condition and blood circulation) and bad effects (e.g. whether any lymph vessels might have been nicked and might be leaking after the surgery). Later on in the evening, Dr. Ozawa came back and listened to Isaac's heart and said that Isaac's heart murmer from his PFO (the other smaller hole between his left and right heart chambers) seemed to have decreased but he said that we will need the cardiologist to confirm as the cardiologist would be much better at listening for heart murmers.

I was able to spend from about 3 to 3.5 hours with Isaac this afternoon. He was very tired and slept most of the time but it was just so great to be able to sit next to him and pray for him and sing to him. Isaac was stable the entire afternoon and the oxygen mix being ventilated into his lungs went from 35% post surgery to 25% before we left. They also started his first feed at 7 pm before we left and Isaac got really fresh milk to break his fast (starting from 4 am this morning) as I pumped for him at 6:30 pm. ^_^ Poor little Isaac was getting quite hungry as I noticed that he had opened his mouth and started licking at thin air at around 6 pm!

We forgot to bring our camera today so we hope that Isaac will still be in the open bed tomorrow for us to take some good pictures of him. We were glad we didn't have the distracion of a camera today and just spent some good quality time with him today.

We just feel so blessed. Our God is so good. Thank you all of you sooooo much for all of your loving prayers and support. We are also very thankful to the doctors and nurses - they all seem to genuinely care about Isaac and they really did a very good job taking care of him.

In Christ,

Sonia

Surgery Went Well! Please Keep Praying For No Complications

Hi Everyone,

We are still at the hospital (and will likely be here for the rest of the day) but we wanted to post a quick update to let you know that Isaac made it through his surgery without any major complications. Thank you Lord! A million heartfelt thanks for all of your prayers and thoughts as well.

The surgery lasted about 3.5 hours and while there may likely be post surgical complications (e.g. torn sutures because his skin and inner membranes are so thin) the doctors said that the procedure went as well as could be expected. We won't know how effective the procedure was for a few days but we were actually able to see Isaac again post surgery and he seemed tired and groggy but pretty good all things considered.

Sonia and I are so exhausted but so relieved. We're so very thankful to our Lord for giving us peace during the actual surgery. We were pretty nervous and anxious trying to prepare for any eventuality but everything seemed to fall into place and an amazing calm (Sonia is giggling right now as I originally typed "amazing clam") settled upon us (Sonia's insert: i.e. Jong fell asleep under the clam) the minute Isaac started his journey into the operating room.

Thanks again for all of your continuing support and prayers for our baby boy.

Blessings,

Jong

Start Time of Surgery

Dear all,

Just a quick update on the start time of Isaac's surgery. We confirmed that his surgery will start from 9:30 am to 10:00 am Tokyo time tomorrow, which is:

-10:30 am to 11:00 am Sydney time
- 8:30 am to 9:00 am Hong Kong time
- 8:30 pm to 9:00 pm Wednesday Eastern Standard time

You can also check the time conversion on here - http://www.worldtimeserver.com/time_converter.aspx?f=JP

We don't know how long the entire procedure will take but it might take up to 4 or more hours. Also, we have been told that so long as Isaac is stable, we can spend a lot more time with him than usual because its his day of surgery so we might be in NICU for a while and may not be able to update promptly or receive calls while we are in there. But we should be able to post something before we are allowed into NICU for the long visit.

Isaac's CRP/infectious score was 0.1 today, which basically equals zero - praise the Lord! However, his eye check up today confirmed that he has Stage 2 ROP (Retinopathy of Prematurity). Isaac will get another eye check up next week to see if he needs laser surgery for his ROP. Laser surgery is a much, much simpler surgery than the heart surgery Isaac is getting tomorrow so we are not overly worried. But please do pray for his vision and his eyes as well.

We have a very early start tomorrow so I will sign off for now. We really appreciate all of your prayers!

God bless,

Sonia

Pls Remember to Pray Tomorrow Morning Asia time/Wed Night U.S. time

Dear all,

The week has really flown by since we met with the surgeon last week. I almost can't believe that Isaac's surgery is going to be tomorrow. Isaac looked good when we saw him last night. We were allowed to give him some of my milk using a Q-tip stick and he really, really enjoyed it. He really tried to lick the Q-tip soaked with my milk and was almost smacking his lips!!! ^_^ He weighed 1,132 grams yesterday and his CRP/infection score was 0.2. I am hoping that we will learn that his CRP is at zero or 0.1 today when we go this evening. I have been having difficulty staying awake to update our blog after I finish taking care of everything at home and for work after we return home from the hospital each night so I am going to post our specific prayer requests now just in case.

Isaac's surgery is going to be tomorrow morning Japan time. We know its going to start after 9 am although we don't know exactly when. It sounds like it may start somewhere between 9:30 or 10:00 am but we are not sure (that would be 8:30 pm or 9 pm EST on Wednesday night). So please pray for Isaac's surgery tomorrow morning (Thurs June 22) Asia time / Wed June 21 evening EST.

Here are our specific prayer requests for Isaac's surgery:

1. for God to guide the hands of the surgeon, anesthesiologist, other doctors and nurses
2. that Isaac will tolerate the general anesthesia well and will wake up quickly from it
3. that the surgeon will only cut the parts he is supposed to cut and not accidentally injure or cut nerves or other nodes that he is not supposed to
4. that the surgeon will be able to be able to quickly and succesfully double ligate Isaac's PDA without any complications or too much bleeding, that Isaac's PDA will be firmly closed once and for all and that the surgeon can close up quickly and successfully
5. for Isaac's breathing, oxygen saturation level and blood pressure to stay stable through out the surgery
6. that after Isaac's PDA is closed, the left chambers of his heart will go back to normal size and Isaac's PFO will close on its own
7. that Isaac will recover quickly from the surgery, including recovery from the position the surgeon will need to put Isaac in for a long term during the surgery, healing of the wounds from the surgery and that he will not develop any infections or other complications post surgery
8. that Isaac's digestive system will recover quickly so he can resume intake of nutrients and milk soon after the surgery
9. That the surgery will help Isaac's CLD to heal quickly so that Isaac can breathe on his own soon!
10. Most importantly, for Isaac, Jong and I to stay close to our Lord's heart through out and after the surgery so that we can be a family firmly centered on our Lord Jesus Christ.

Thank you very much for your prayers. We will try to update from the hospital when we can. We expect his surgery to take all morning and may be even the early part of the afternoon so we may not be able to update till later in the afternoon, especially if we are allowed to spend some time with Isaac inside NICU.

I had wanted to post some pictures from last night's visit but can't do that right now. I will try to put up some pictures later if I can.

Take care and God bless,

Sonia

A couple of "firsts"

We finally moved! We are completely not unpacked but everything is out of our old apartment and into our new apartment. Unfortunately, the movers took quite long yesterday so I had to stay behind when Jong went to the hospital to see Isaac.

Work was really insane today and Jong had a dinner meeting so he went to see Isaac earlier. Lucky for Jong, Isaac was really awake yesterday and today when he saw him. But Isaac was slept through when I was there tonight. This is a picture of Isaac from yesterday.But a couple of "firsts" - today was the first time I got to buy something for Isaac to use. The nurse asked me to buy Isaac a bar of soap - they specifically asked for name brand and type but here is what I bought for Isaac. I think its so cool that they are washing Isaac with soap now!! I know its silly but I was really happy I got to buy something for Isaac today that he actually gets to use soon!Second "first" today was the first time my dad got to meet Isaac in person. I got special permission for my dad to see Isaac inside NICU for about 10 minutes. My dad was a happy camper!!My dad also serendipitously got to meet Isaac's surgeon tonight as he was waiting outside of NICU waiting for his time to meet with Isaac. The surgeon spoke with my dad for a while and assured my dad that they are going to try their best to make sure Isaac's surgery goes as smoothly as possible. The surgery is still scheduled to be on Thursday - but it might start a little later that morning. I am not sure what time but please do be praying Thursday morning Asia time/Wednesday evening U.S. time. Also, Isaac's infections score/CRP blood test was 0.2 today. I am praying for it to go to zero soon.

Unfortunately, the little girl we mentioned last week is no longer there. My guess is she is now in heaven along with Rachel. Please pray for her parents and her grandparents.

Good night,

Sonia

Busy Packing

Hi everyone,

We are busy packing today because we are moving tomorrow. But I wanted to drop a quick note to let all of you know that Isaac's CRP blood test results were 0.4 today, down from 0.8 yesterday. Hope it gets to zero tomorrow! His fever is also gone and his temperature was normal.

He was sound asleep today because we got to the hospital right after he was fed. Jong ended up falling asleep on the chair next to Isaac - for some reason, Jong always get very sleepy next to Isaac.

Take care!

Sonia

Letting Go A Little More

I woke up at 4 am from a coughing fit and decided to go see a doctor in the morning as this cough I have has been causing me to gag and even throw up a few times. I was able to get a 9:40 am appt. I explained my symptoms to the doctor and told him that I have a micro-preemie I am pumping milk for so I am nervous about what kind of medication I can take. He said he was going to prescribe me some cough syrup that won't affect my milk. So I go get the cough syrup and it has codeine in it! I asked the pharmacist if it was ok and she confirmed with the doctor that its okay but codeine does pass into breast milk. To play it safe, I decided to call Toho's NICU to make sure. Well, the doctor on staff said its definitely not ok to take medication with codeine. So I got back to square one and still had no medication for my cough. At that point, I decided that things were actually getting kind of funny because nothing seems to be working the way I want it to so I decided to just relax and go for the ride. (I am planning to get a new prescription for just cough syrup without codeine as the NICU doctor said the cough syrup part is okay.)

In any case, I started feeling sooooo much better after deciding to let things go. When we got to see Isaac, we learned that his infectious score went up slightly to 0.8 but Jong thought that anti-biotics usually takes about 2 days to kick in. The nurse also said that she thinks the score will go down tomorrow. However, Isaac is running a low grade fever (37.7 C) so please continue to pray that the anti-biotics work quickly and effectively to get rid of the infection. In any case, I didn't get panicked or stressed with this news and I am glad I let things go before I went to visit Isaac. I mean I knew everything is in God's control - I think the hard part was to let go of trying to control the outcomes myself (like I had any control!).

We did get some good news - Isaac is now 1,081 grams. And he definitely did not look bloated so we are pretty confident its "real" weight. We didn't end up taking any pictures tonight because we have been more focused on trying to spend quality time with Isaac the past few days. But Jong did take a couple of pictures yesterday when I touched Isaac briefly after not having touched him for a few days. I like the picture with my thumb touching Isaac's thumb.

Isaac did do something really funny. We were there when the nurse was changing Isaac's diapers. When the nurse started pulling his butt up for the change, Isaac immediately locked his knees and stuck his butt up kind of like the pictures we posted a couple of days ago to "help" the nurse out. He was soooo cute!

As I mentioned before, my dad came to help us pack and move and our actual move is on Sunday, Father's Day. I am trying to get special permission for my dad to meet Isaac for the first time in person on Sunday or Monday evening - kind of like a Father's Day present. So I am praying that Toho will be kind and allow it to happen. My dad has helped us so much these past 6 months. He would fly over to Tokyo from Beijing whenever I needed him. We really couldn't have done this move without him as Jong has been too busy to pack and I think I have packed 2 boxes myself so far! Thank you so much, daddy! : )

Oh, one more thing I forgot to mention before is Jong has cancelled his trip next week so he will be here for Isaac's surgery. Yeah!!!

Hope you all have a blessed weekend,

Sonia

Another Tough Day

Dear all,

Jong and I were pretty much in shock this morning over all the things we learned last night. The whole day went by like a blur for me as things were quite busy at work as well. We ended up getting to the hospital late because of some miscommunication, bad weather and horrible traffic (sometimes we drive to the hospital instead of taking the trains - on hindsight, we should have taken the trains tonight). In any case, we arrived and noticed that Isaac had an IV again. We asked about the IV and learned that his blood test today showed an infectious score of 0.6 so they started giving him antibiotics again. I felt so discouraged. It seemed like nothing was going right (my nasty cough also doesn't seem to be improving). We only got to spend 30 minutes with Isaac tonight. It was very tough to look at how sweetly he was sleeping knowing that he has to go through such a difficult surgery in a week.

We then met with the anesthesiologist who turned out to speak the best English out of all the doctors we have met so far. We ended up asking him a few more questions that were more general than specific to Isaac's general anesthesia. During the meeting, we learned that Toho University Hospital just does not do PDA ligation via laparoscopy like they do in the U.S. We don't really know why that is as from what we know, the laparoscopy approach seems to be a much quicker and less invasive surgery. However, we also know God put us at Toho for some reason and Isaac has done well under their care so far. I mean, we don't even know if Isaac would be a candidate for the laparoscopy approach because of his condition and the size of his PDA even if we were in the States. In addition, the surgeon really does seem to be well respected by the other doctors at Toho. I forgot to mention when I posted last night that the surgeon told us that he has performed microscopic heart surgery on mice many times and has always been successful.

In any case, it has been very tough. However, we are trying our best to surrender to God and trust in Him. Please pray for Isaac's infection to be healed asap and for his infectious score to go down to zero soon.

Take care and good night,

Sonia

A Sobering, Yet Blessed Evening

Dear all,

Believe it or not, we just got back from the hospital (at around 12: 15 am). We arrived an hour earlier tonight to spend time with Isaac from 6 to 7 pm before we met with the doctors. We then met with the doctors from 7 to almost 9 pm, and then grabbed a quick bite while waiting for the surgeon to prepare some consent forms (he took a bit of time because he very kindly tried to come up with an English translation for us). We ended up finshing up at the hospital a little past 11 pm.

In any case, we learned quite a few things about Isaac that we didn't know before:

-his PDA is very big for his size (2.5 mm)
-his PDA has created a lot of pressure in both of his left heart chambers and both chambers are enlarged
-there is a small hole (Patent Foramen Ovale) between one of the right heart chamber and one of the left heart chamber (sorry I don't remember which chambers)

Because of Isaac's size, prematurity and the large size of his PDA, this will be a much more complicated and riskier surgery than we originally thought based on what we have read and been told about PDA surgeries in the U.S. (I think in the U.S. it is usually a laparoscopy type surgery where a very small incision is made and the PDA is quickly closed with a metal clip). They will actually need to go in through Isaac's side/chest and suture his PDA up with silk thread. Once his PDA is ligated with the silk thread, the pressure in his left heart chambers should decrease and hopefully the small hole between his left and right heart chambers will close naturally because of the decrease in pressure and blood flow going from the right heart chamber to the left heart chamber. They couldn't tell us how long the actual surgery will take but they mentioned at least 2 hours.

There are a multitude of possible complications and I won't mention them here. I think both Jong and I were both a bit shocked coming out of the 2 hour meeting and having a hard time thinking that our tiny little boy will have to go through such a difficult surgery at such a premature age. But we very quickly realized that we have started getting a little too cocky about being in control again. I think we both thought PDA surgery would be simple and something that we can handle. God quickly reminded us that we really do not have control over anything, especially when it comes to Isaac and that we absolutely cannot handle things on our own without surrendering the whole situation to Him. At the end of it, we felt very blessed because God has given us such a special boy. It seemed like God allowed us to see Isaac very strong and active last night to give us comfort that Isaac is a very strong and determined boy. Yesterday, Isaac really seemed determined to climb to the front of his incubator and it seemed to me he really wanted to get out and go home.

Next week will be a very tough week between our move and Isaac's surgery. We therefore humbly ask all of you to pray for us, especially Isaac and the surgeon, anethesiologist, doctors and nurses. We are praying that the surgery will be successful with no complications and that Isaac's condition will really improve after the surgery. Please also pray for healing for me as I really want to recover from this really bad cough that I have and for Jong to regain some energy as he has been working himself ragged these days.

Unless there are changes in Isaac's condition, his surgery is scheduled to begin at 9 am Tokyo time next Thursday June 22. That is 8 pm Wed June 21 EST and 8 am Thur June 22 Hong Kong time.

Thanks for all your prayers for our precious little Isaac,

Sonia

Isaac "Wanpaku" Lee

Dear Friends and Loved Ones,

Well today was quite a day at the hospital. We arrived late after a crazy day at our respective jobs to discover that Isaac officially hit the 1kg mark! Yeah, Isaac! He weighed in at 1,016 grams. Today was also Isaac's 33rd gestational week. Happy birthday, son!

It appears that all of the good news got Isaac even more excited than his mommy and daddy as he was a nonstop wanpaku all during our visit! (Wanpaku is japanese for rascal). Notwithstanding being really really frustrated that his head was too heavy to lift, Isaac kept trying to pick up his head and move forward with his arms and legs. In fact, on several occasions, he kept arching his lower back and bottom into the air while extending his legs (sorry upper torso wasn't cooperating) and he almost looked like a cat stretching (he was on his tummy again all during the visit). A couple of times, he sort of tried jumping like a frog off of his hind quarters! We were so shocked by all of this we weren't quite sure it was actually happening. Throughout it all, he seemed determined to pull his ventilation tube out!!! The nurses were scampering trying to figure out how to calm him down and keep him from pulling on anything.


Fortunately, Isaac finally tired himself out. opened his eyes for a bit to see if we were still around and crashed into a deep deep sleep. he looked so much lankier today than we are accustomed to. I think it is largely because they put him in "low rider" diapers today so that he sort of looked like he had "plumber's butt"! It was really funny. I'm sure it is our imagination but he body looked so much longer than usual.

Through it all, seeing him moving around so much and pulling at his tubes, we couldn't help but think that he must be getting so sick and tired of the incubator thing!!! We couldn't agree more. Hopefully, he'll keep fighting and his determination and His grace will continue to help him resist infections or complications and will ensure a swift recovery from surgery.


In any event, I think Sonia and I really needed an exciting day with Isaac. We've both been missing Rachel a lot. We are in the process of moving and finding a new spot for Rachel's ashes and keepsakes brought a rush of emotions and memories back. At the same time, I think it is hard for Sonia not to remember that fateful morning when she was on our bed reluctant to move as she felt something was terribly wrong every time we are back in the bedroom. Hopefully, the new place will help a little without diminishing how special our daughter was and is to us.

We will meet with Isaac's heart surgeon tomorrow to confirm his surgery date. He seems to be breathing ok (in fact, they inserted a bigger breathing tube today which may be one reason Isaac was so active).

As we got ready to leave, we noticed that another tiny baby girl was having a very hard time. She's been in the NICU for a few days now. It appeared that both her mommy and daddy along with several extended family members were there with her which usually means that things are not looking promising. We really felt so awkward suddenly - emotionally caught between an amazing hour with Isaac and his progress and the vivid memories of our time with Rachel in her incubator just a few feet away from where this Japanese family had gathered. We don't even know their names but we hope to see them again first to apologize for not realizing fast enough that they were trying to spend perhaps their last few precious moments with their baby girl (we were a little noisy because of Isaac's rambunctiousness) and to express our sympathies for their loss.

Blessings,

Jong

A little conversation with Rachel

During my shower this morning, I thought I heard this sweet little girl's voice talking to me:

"Mommy, mommy, please don't be so sad. I am really doing okay here."

I said:

"Oh my dear darling angel girl. I know you are okay there but I just miss you so very much. Please pray for your brother Isaac. Please pray for him to heal quickly and come home soon. Please pray for your mommy and daddy as well. We are having a hard time here without you. You were such a brave and strong little girl. Please pray that mommy can be as brave and strong as you are."

"The LORD is close to the brokenhearted and saves those who are crushed in spirit." Psalm 34:17-19

Our Little Sweetheart

Dear all,

I just wanted to post a few pictures tonight because Isaac looked so cute. First of all, when we first arrived, we noticed that Isaac had a cover on and looked really snug like a bug in a rug. The nurse had put the cover on top of Isaac as he seemed just a little cold.
Then, we also noticed that the nurses had drawn a heart on the bandage on his face. Hmmm, I wonder if the nurses are getting a little crush on our little Isaac. He could be the newest Korean heartthrob in Japan! (Korean dramas are really popular in Japan these days, especially Korean actors. ^_^)
I didn't touch Isaac tonight because I didn't want to get him sick but daddy had a good time with Isaac.
Good night,

Sonia

Daddy's home (for a week or so)

Dear all,

I did get sick and am still sick - which is why I haven't posted. Actually, Saturday ended up being really busy which probably made things worse and I have been sick yesterday and today. We are also trying to pack as we are moving this coming weekend. So I will probably be posting less this week. I will definitely post after we talk to Isaac's pediatric cardiologist on Wednesday about his PDA surgery.

Jong was sooooo excited to see Isaac on Saturday. He almost elbowed me out of the way to get to Isaac's incubator faster. We didn't know that babies (esp. premature babies) do this but when Isaac wants to go to sleep and its to bright for him (for those preemie moms in the U.S., they don't keep NICU dim in Japan), he actually uses his arm or his hands to block out the light from his eyes. When I first saw this, I thought it was a fluke (his arm/hand just landed on his eye area) but it has happened enough times now we don't think its a fluke anymore. In any case, apparently he was doing that before we arrived on Saturday so the nurse dimmed the lights near his incubator and covered his incubator top with a towel so we used the high exposure function to take some pictures on Saturday.

Jong got to spend some really good quality time with Isaac on Saturday. There were too many other mommies and daddies there on Saturday so I couldn't pump next to Isaac's incubator, then the nursing room was occupied so Jong got to spend almost 1 hour 45 minutes with Isaac while he waited for me to pump. Jong said Isaac woke up after I went to go pump and was looking around quite a bit.

Here are a couple of pictures from yesterday.


Take care and God bless,

Sonia

982

Yes - that was Isaac's weight yesterday. We are getting soooo close to 1 kg! Two months ago, it seemed almost impossible to wait for him to get to 1 kg when his weight dropped to 499 grams and he was just skin and bones and we were worried he was going to starve to death.

I haven't posted his measurements that often but here are his measurements from yesterday:

Body Length: 33.7 cm (compared to 32.4 cm on April 22)
Head Circumference: 26 cm (compared to 21.5 cm on April 22)
Chest: 21.9 cm (compared to 17.3 cm on April 22)

Unfortunately, Isaac isn't doing as well in the growing department. I asked the doctor on Wed night about his measurements. Based on Isaac's measurements from last week, his head circumference is on the lowest edge of the range that is acceptable and his body length is below the acceptable range. Please pray for him not just to gain weight but to grow - especially his head as that could affect his brain development.

Isaac pretty much slept the whole time I was there last night but he had the hiccups when I first arrived. Jong and I will meet the pediatric cardiologist who will perform Isaac's surgery next Wednesday night and will find out whether Isaac's surgery will go ahead or not on June 22.
Unfortunately, it seems like I am getting sick again. I started getting a cough last night. When Jong isn't here, I take the trains to go to the hospital and there seem to be a lot of sick people on the train these days so I probably caught it from there. Please pray that I can nip this one in the butt. I really cannot afford to be sick these days, especially this week.

We are moving this week. Packing and moving fragile things ourselves first through out the week and the big move is next Sunday. Fortunately, my dad arrived last night to help us pack and move. We have so little time these days that we would not be able to do this on our own so I am very thankful my dad is here for the rescue again. The only thing is he has never done any moves (my mom has always done them herself because my dad also used to travel a lot) so we already need to repack some of the stuff he tried packing before he left on this last trip - e.g. he packed really big boxes full of books making the boxes to0 heavy and packed breakable kitchenware without wrapping any of them with anything! LOL! Fortunately, even if we break everything, we don't have anything that expensive. In fact, all our dishes are really cheap - we have a set from a Mikasa outlet store that costed me $19 and a bunch of stuff from 100 yen stores (a bit less than $1 a piece). I am very excited about moving because our new apartment will be the apartment where Isaac will come home to and we will have our new life as a family together. Our current apartment has been great but it represents our old life - our life without children. Also, it almost seemed like I knew deep inside me what was going to happen in our pregnancy during my first trimester because I was slightly depressed throughout my first trimester. I guess my recent memories while living in our current apartment hasn't been so great (from the early pregnancy days, to the ice cold fear I felt the morning before I was admitted to the hospital after discovering that I lost my mucous plug, to the recent days of grieving and mourning). However, we do have very fond memories of this apartment as we have made so many great and dear friends since we moved here to Japan. We have lived in this building (although not always in the same apartment) for 3 years 4 months. The longest I have lived in the same place is 2 years since I turned 18 so we will really miss this building. Although many of them have already moved away from Japan, we made some really great friends in this building. Plus we will miss our really great views as you can see below (we live on the 36th floor).

Our view of the Imperial Palace:

Our view of the Japanese Diet:
Our view of Shinjuku:
A view of the spread of buildings in Tokyo:
Well, Jong should be arriving home shortly. I guess if I had to get sick, this would be a good time since Jong will be here this week and he has missed Isaac so much anyway it would be good for Jong to touch Isaac most of the time (I try not to touch Isaac when I am sick).

P.S. How could I have forgotten to report this - Isaac has had NO IV in him since Wed!!! Please pray that he won't need another IV until his surgery. It would be so great for him to be IV free for a while! : )

Take care and God bless,

Sonia

Some pictures

Dear all,

I am so sleepy if I tried to write a lot, I wouldn't make sense so I am just going to post a few pictures tonight. Isaac was awake in the beginning again and this time he was really looking around checking things out.
His back is filling out nicely too. He was funny, he kept trying to wriggle upwards - so much so the nurse had to pull him back down a bit! He also ended up having hiccups for a while. He was very cute!

Take care and God bless!

June 22

Dear all,

I spent some time talking to Dr. Ishii tonight. Isaac's PDA surgery is scheduled for June 22. The surgeon will check his condition one more time next week to confirm that the surgery should go ahead on that day. Unfortunately, Jong is currently scheduled to be away on June 22. Basically, they only do surgeries (or this type of surgery - not sure which is correct because of the language barrier) on Thursdays. Jong is here next Thursday but they already have a surgery scheduled for next Thursday. Jong is then away for 2 Thursdays in a row on 2 separate trips and we don't want to wait another 2 extra weeks for Isaac's surgery.

I actually do want to get pass the surgery sooner rather than later because we are planning to start discussing Isaac's possible move with Dr. Ishii after his surgery. I really do want to get Isaac transferred because not being able to spend more time with him is becoming harder and harder as he is becoming more aware. Every preemie parent has told me that I need to spend as much time as I can with Isaac for his health. Toho is not going to change its policy although the nurses do realize that many other NICUs no longer has this arcane policy (apparently as I suspected, their policy is not really for the babies' health but is at least partially because the nurses in the "growing room" don't want to have to deal with parents hanging around for too long and they can't change the policy for just NICU and not the growing room). So many times during our visits, esp. towards the end, Isaac keeps peeping his eye open and it really seems like he is trying to see if we are still there. Tonight, when he peeped his eyes open, he was definitely peeping at me cause we made eye contact. It really, really breaks my heart that I am not allowed to be with him for longer.

Anyway, I need to go to bed as I have an early start tomorrow. I will post pictures later.

God bless,

Sonia

958

Hi all,

I was going to do this quick post last night but konked out with every thing on! In any case, I am happy to report that Isaac weighed in at 958 grams yesterday. He is getting awfully close to our long time goal of 1 kg! Hopefully, he will start gaining weight faster and faster! They also increased his feeding to 15 ml per feeding. I will talk to Dr. Ishii tonight and hopefully I will find out more information about his PDA and the surgery.

Isaac was basically konked out the entire time I was there and looked exactly like this the whole time I was there.He did peep open his eyes just a few times. I think he was emanating sleep fermones because I got really sleepy by the time I finished my visit with him. : )God bless,

Sonia

Was Isaac snoring???

Dear all,

Isaac's poor daddy had to fly off this evening and couldn't see Isaac because he ran out of time and had to go to Narita Airport. Jong was quite sad he couldn't see Isaac before being away for the rest of the work week.

Isaac's attending nurse opened the door for me and excitedly told me that Isaac was wide awake with his eyes opened so I washed my hands as quickly as possible (LOL - I still had to do it for 3 minutes as dictated by the sand glass) and rushed in and Isaac was still awake. For some reason, may be because he is lying on the side, he tends to open one eye like a one eye bandit. ^_^
Shortly after staring into his beautiful eye (yes, not eyes), the nurse let me feed him a little bit of my milk in his mouth with a Q-tip. Once he starting tasting my milk, he immediately got sleepy and fell asleep. But he kept peeping open his one eye, as if to make sure I was still there. I started pumping next to his incubator the last 20 mins of my visit and he woke up while I was pumping and we stared into each other eyes (my eyes, his one eye) for quite a while. Then he got tired and fell asleep. That's when I swear I heard him snoring. I have heard air leaks before and this did not sound like the air leaks I have heard before. I don't know if its possible to for Isaac to snore while on a vent but the snoring like sounds stop when he woke up again! I definitely felt like I spent some quality time with Isaac tonight. We even prayed for daddy together!Its actually kind of odd (in a good way). Although the pediatric cardiologist said that the blood through his PDA has increased, it really does seem his lungs are doing better. His oxygen mix was 27% today and his oxygen saturation levels were quite stable and good. Just a week ago, his sats would crash everytime he moved and the nurses would have to manually pump air into his lungs until it gets better but today, when his sats dropped a bit after he moved, it would climb back without extra help quite quickly. I have almost been afraid to pray for a big miracle like his PDA healing on its own without surgery after having been reopened for so long because I feel like its already such a miracle for him to be doing quite well being born so early. But now with the improvement of his lungs, its almost like God is telling me its time for me to not be afraid to pray for big miracles.

Jong thought that it was premature for us to send a letter to Dr. Ishii about our desire to move Isaac to Red Cross Hospital later and thinks its better for us to do so after Isaac's surgery. So I have to learn to be more patient and not go too crazy missing Isaac!

Good night and God bless everyone!

Sonia

Happy 2 month Birthday!!!!

Happy Birthday Isaac and Rachel! We can't believe its been 2 months already!

We got some clarification on Isaac's PDA condition today from the doctor. It turns out that his PDA did not get bigger but the blood flow between his heart to his lungs through his PDA has increased. That explains why the pediatric cardiologists wanted to make sure his oxygen saturation/SpO2 wasn't too high. However, the doctor said Isaac wasn't comfortable with the lower oxygen mix they were giving him yesterday (it was 23%) so they increased it to 30% today and will try to lower it and keep it at around 27.5%.

For some reason, Isaac seemed really uncomfortable while we were visiting and fussed and cried quite a bit (since he can't make noises because of the vent down his throat, when he cries, he just looks like he is crying). We took turns in laying our hands on him to try to calm him down.

The doctor said that Isaac's PDA surgery will be sometime in June. Perhaps in 2 weeks. The cardiologist will meet with other doctors on Tuesday to discuss Isaac's condition and probably make a decision as to his surgery date. I will talk to Dr. Ishii again on Wed evening so I should have more to report on his PDA surgery then. In the meantime, they have increased his feeds to 14ml per feed. I asked the doctor when he thought we can attempt to switch Isaac from the ventilator to CPAP (nasal cannular) and he said they will probably try after his surgery. I then asked if its possible for him to be switched to CPAP before his surgery and he said if Isaac can be switched to CPAP before the surgery, it would mean that his PDA has healed on its own and he wouldn't need the surgery. That would be a real miracle!

By the way, switching to CPAP would require Isaac to remember to breathe on his own as currently, the ventilator breathes for him (sometimes preemies forget to breathe and have episodes of apnea). Being on CPAP would mean we can hold him, do kangaroo care and they can finally try to feed him through his mouth and not through the feeding tube. In addition, when he has learned how to coordinate breathing, sucking and swallowing, he will be able to nurse from me directly! Basically, he really needs to go to CPAP before we can even start thinking about a date when he can come home with us.

As for me, I got quite impatient and antsy about Isaac coming home today. I started feeling panicked that I may have to wait quite a while more before he could come home. So I really had to take a deep breath and remind myself that God has made everything beautiful in its time. Funny thing is I received this really thoughtful care package from my Hannah's Prayer sisters last night and included in it was a fan with Ecclesiastes 3:11 written in Japanese on it.

Well, I can't believe its already 9 pm on Sunday night. The weekend went too quickly! I am going to draft my letter to Dr. Ishii regarding Red Cross now.

Before I go, I just wanted to post a few pictures from today for you. You can see how much hair he is getting and his hands are getting chubbier and more like a baby's hand in the picture with the back of his head facing the camera.



God bless,

Sonia

Isaac's PDA got bigger

Dear all,

The nurse told us today that the pediatric cardiologist performed an echocardiogram on Isaac yesterday and unfortunately, his PDA got bigger. We don't know what this means with respect to his surgery date but should know more tomorrow as we will get to talk to Isaac's doctor tomorrow.

One thing that the cardiologist instructed was for the nurses to try to keep Isaac's oxygen saturation level (SpO2) between 85%-92%. We are not sure why this would help his PDA but hope to find out tomorrow. This instruction is quite difficult for the nurses as its a pretty narrow spread so when we were there, the poor nurses were running back and forth adjusting the percentage of oxygen being ventilated into his lungs to control his Sp02 level. Please pray for the nurses to be able to pay close attention to Isaac's oxygen levels and breathing but also for them to have the energy to be able to pay such close attention to Isaac while still trying to take care of the other babies (esp. during the weekends and at night as they have less nurses on duty).

Isaac was awake during a big part of our visit today. His eyes were wide open when we first got there. I ended up expressing milk in a separate room so I missed a part of our visit towards the end and Jong said he woke up again and was doing a lot of funny things. I missed him putting his thumb in his mouth!

Jong also took a whole bunch of pictures today. Here are some of them. He stuck his tongue out in the last picture. : )





Take care and God bless,

Sonia