Our Testimony about Isaac and Rachel

Dear all,

Pastor Dennis preached about the second Beattitude today - "Blessed are those who mourn, for they shallbe comforted" and we shared our testimony with our church. I would like to share our testimony here as well. But before I post our testimony, just a quick update on Isaac. Please continue to pray for healing for his low blood pressure, poor circulation, anemia and CLD. His low blood pressure continues to cause his breathing to be unstable and he received his 4th blood transfusion today for his anemia. We saw him smile again. We have been able to see him smile 3 days in a row - so they must really be smiles right? He is so expressive - he frowns and smiles and yawns and looks surprised. It is just so great to look at his expressions. He is also very expressive with his hands (well at least one hand because he still can't really move the other hand because of the IV in that arm). We are hoping that his expressiveness means that his brains and nervous system are developing well.

Anyway, here is our testimony. I apologize for the length.

Testimony:

Jong:
Dear TBC brothers and sisters,

First of all, my wife Sonia and I want to thank you from the bottom of our hearts for all of your prayers for Rachel, Isaac and us during the last couple of months. We could not have made it here without them. Originally, we planned to organize a memorial service for Rachel but when Pastor Dennis mentioned that he was giving a sermon on the second Beatitude about mourning, we thought our testimony was a better way to honor Rachel’s memory and share our story of God’s truly amazing love, wisdom and mercy.

Sonia:
I apologize in advance for walking down memory lane but I thought some context would be helpful. Jong and I have always wanted children but were not able to conceive after 9 years of marriage. Last November, right around our 9^th year wedding anniversary, we were overjoyed to learn that God had given us not one but two babies! We always wanted at least two kids and it seemed like God was going to complete our family in one shot. Initially, I had the best pregnancy apart from hating the smell of Doritos chips (Jong’s favorite) and a few other things. I had no morning sickness. All of our checkups were always perfect and our babies were growing right on schedule. When we passed the first trimester so smoothly, we thought we were home free. At my 17th week checkup, our doctor confirmed that we were having a boy and a girl. It was perfect as both of our mothers really wanted a boy but Jong and I really, really wanted a little girl. It seemed like all of our dreams were coming true.

Unfortunately, just a week later, at exactly 18 weeks, our world came crashing down around us. We discovered that although my cervix was long and closed just a few days ago, it had silently dilated and our little girl’s sac was bulging out of it. Our doctor immediately admitted me to the hospital, but despite his efforts, her sac ruptured overnight and she lost all of her amniotic fluids. We were told that we should expect labor to start soon and that we would lose both babies. We were devastated and immediately named our babies Rachel Grace and Isaac Samuel. We named our son Isaac because we knew that our babies were gifts from God and we needed to be willing to give them back to Him if that is what He wanted, just like He asked Abraham to sacrifice Isaac.

But what followed was 5 weeks of miracles. Despite having no water or room in my womb, Rachel was able to stay alive inside me for 5 weeks. Our doctor even told us that it was a miracle as he has never seen a pregnancy like this last this long. By God’s mercy, He gave us 5 extra weeks to spend with our babies – time to talk to them, sing to them and pray with them. At times we hoped and at times we despaired. Unfortunately, I started contractions and developed an infection so the doctors performed an emergency C-section on me when I was only 23 weeks pregnant, and Isaac and Rachel were born on April 4th. As Rachel did not have any water to develop her lungs, we knew her prognosis was very grim. But she was very strong and struggled to stay alive for 1 hour 42 minutes; just long enough for the hospital staff to cart me from the operating room to the Neonatal Intensive Care Unit to spend 10 minutes with her before she went to heaven. Jong spent almost the entire hour and a half with her. Fortunately, by His mercy, Isaac is still in the hospital trying his best to grow and develop one day at a time, while battling problems that come with his extremely premature birth.

These past 2 months have been the most painful and devastating in our lives. Losing our sweet and brave Rachel and having our tiny baby Isaac in a hospital far away from us, struggling to live, seeing him hooked up to two painful IVs and feeding and breathing tubes has at times been heart breakingly unbearable. However, these past 2 months have also been the most spiritually blessed for us. We feel completely broken – our hearts, our souls, our lives all feel broken. But somehow I think that is how God needed us to be in order to fully realize how much love He has shown us during our entire lives and during our current trials. Every step of the way since I was hospitalized, there was absolutely nothing we could do but rely and trust in Him and He rewarded our faith by opening doors. He also showered us with mercy and kindness – basically allowing us to stop everything in our professional lives to spend time with each other and with our babies for 5 beautiful weeks. Despite their own serious health and other problems, my parents, especially my mother, have been with us since I was admitted to the hospital taking care of us every day with the selfless love, sacrifice and tenderness that only a mother could have for her child. Just as importantly, not a day goes by without us being reminded and reignited in faith by the overwhelming outpouring of prayers and love from all of you, our friends, family and an incredible number of Christian brothers and sisters we have never even met. Just to illustrate briefly, I started a counter on our blog about a week after Rachel and Isaac’s birthday and as of Wednesday, we had over 17,000 hits. People have been praying for us in almost all of the 50 states in the U.S., as well as Canada, China, Hong Kong, Singapore, Thailand, South Africa, Australia, New Zealand, Israel, the U.K., Germany, Czech Republic, Sweden and of course Japan. We even received a card from professional Christian singer Amy Grant because of the kindness of one of our online prayer warriors. God really showed us that our Christian family is indeed a single family in one great big house and that when any of us are in need and trouble, an army of believers truly stands ready to pray and intercede for His glory. We have never felt so loved.

Finally, we know through our Lord’s Word that we do not grieve alone and that every time Jong and I wept, Jesus wept with us. After Rachel went back to our Lord, I was reading the story of Jesus raising Lazarus from the dead. This is part of what I read in John 11: “When Jesus saw her weeping and the Jews with her also weeping, he was deeply moved in spirit and troubled.” And later on in the chapter, it says “Jesus wept.” One of the greatest comfort to me is knowing that our God, our Lord Almighty mourned with us. Jong and I know that we had to be completely broken by our Lord so that our Lord can remold us into better servants of and warriors for God, and to better receive His mercy, compassion and grace. Just as he has shown such generosity in our time of desperation, I know God is working to rebuild us so that we can be counted to serve Him. We know that we are not the first parents to lose a child or to have a child enter the world so early and we won’t be the last, and we are humbled by how special He and all of you have made us feel. We still have a long way to go and we are still heartbroken but the difference is with Jesus as our Lord, even as we are mourning, we have never been without hope and faith as we know that everything is in God’s hands and that He has a plan for us, Rachel and Isaac and that we will all be together again someday. That day to come will be filled with great joy because of the great mourning we have experienced. Just as Matthew 5: 4 says, “Blessed are those who mourn, for they shall be comforted...", and Jong and I have been comforted by the Lord.

Thank you again for all of your prayers and love and God bless.

A poem that touched our hearts

Dear all,

I wanted to share a poem that a Hannah's Prayer sister shared that really touched Jong's and my heart. Isaac was still having problems breathing today and his oxygen saturation levels dropped a few times today. But he looked pretty good when we first arrived and we saw him smile again today. Visiting him is always a big roller coaster ride because we just really love seeing him and he is so cute but its also scary to see his condition go up and down. Jong and I seem to always come out of the visits pretty exhausted. But we are always very thankful for the little time that we are able to spend with him.

Here is the poem. Unfortunately, I don't know the author:

Death of a Child
Sorry I didn't get to stay
To laugh and run and play.

To be there by your side.
I'm sorry that I had to die.

God sent me down to be with you,
to make your loving heart anew.

To help you look up and see
Both God and little me.

Mommy, I wish I could stay.
Just like I heard you pray.

But, all the angels did cry
when they told little me goodbye.

God didn't take me 'cause He's mad.
He didn't send me to make you sad.

But to give us both a chance to be
a love so precious... don't you see?

Up here no trouble do I see
and the pretty angels sing to me.

The streets of gold is where I play
you'll come here, too, Mommy, someday.

Until the day you join me here,
I'll love you, mommy dear.

Each breeze you feel and see,
Brings love and a kiss from me.

Smiles and Daddy's Pinky

Hi Everyone,

I hope that all is well.

We visited Isaac again today. He seemed about the same. He's still taking 10ml per feeding, having difficulty breathing and still on medication for CLD, blood pressure and circulatory problems.

But we could have sworn that he smiled today!!! I know it probably is our imagination but doesn't it look like he is smiling? He also looked just a little chubbier today, especially in his cheeks and while he still seemed tired and a little out of it, he was much more responsive than in the past couple of visits.

While probably against one of our hospital's many many rules, Sonia and I read yesterday night that at 26 weeks it is ok to feed your pinky to your baby. To be honest, after I read that, it was all I could think about until we actually saw him today!

It was so amazing! Sonia made sure I was trim and clean and I got to touch him first today. Isaac took to my pinky so naturally. It was such an experience. He seemed to be so comfortable doing it, suckling, chewing and gnawing. I could feel his little gums and tongue and his cheecks, I wish that I had some of Sonia's milk on it so that he could see how wonderful it is.

Isaac was so expressive with his hands today after I took my pinky away. It almost seemed like he missed it and wanted more. He had his little finger in his mouth, then under his chin and then back in his mouth. He was so cute. We were also so grateful that there weren't too many breathing dramatics today (there were still some but no manual pumping at least).

In any event, weekends can get sketchy as the doctors are not around generally. We were also told that we would get a lot of important test results next Wednesday (brain scan, lung x-ray, thyroid test, weight, etc...). It has been such a tumultuous week that we're really afraid of the brain scan but watching Isaac today melted all of our worries away for a moment.

God bless,

Jong

Continued Problems with Blood Pressure/Blood Circulation

Dear all,

Isaac is still having problems with his blood pressure and circulation. The doctor tried to take him off of his blood pressure medicine last night but his condition deteriorated without the medicine so they had to put him back on. He is still struggling with chronic lung disease and his oxygen levels dropped quite a few times while we were there.

We had a scare today - Isaac's attending nurse was a different nurse that we have never met before today and when we got there, we noticed that he was positioned awkwardly and did not seem comfortable - basically, they had him propped up on his belly with his head lying sideways but they propped his belly up too high and his head too low. So we asked why they had him crunched over like that and they decided to try to prop his head a little higher. Anyway, as they moved his head to put more cotton pads under his head, he looked soooooo scared. It was so heartbreaking and really scared both Jong and I. I guess the good thing is he seems to really have the right reaction/facial expressions to everything but it was hard to see him so scared. After they did that, he was awake for almost the entire hour but did not look good. He looked completely exhausted, our poor little boy. May be he had a rough night last night as well.

As he was awake, he opened his eyes quite a bit and at times he had them pretty wide open. It appears that our boy will have pretty big eyes. I guess he might have taken after me.

Jong and I are getting pretty exhausted physically and emotionally and I know we haven't had it that rough so far. We don't know how the rest of you preemie moms do it! I am not sure if its because of the milk pumping but I get so tired at night and can't seem to stay awake between my evening milk pumping sessions, which is not the most convenient thing to do because I keep messing up the timing and having to wake up to pump milk. I hope I can stay awake better when I start working next week!

We finished writing our testimony and will be sharing our testimony in person at our church, Tokyo Baptist Church's Sunday 9 am service. We will also record our testimony on Saturday afternoon so a video of our testimony will be shown during the other 4 services. We pray and hope that God will use our testimony to reach out and touch people and may be plant some seeds and encourage people to get to know our Lord better.

Also, yesterday, on our way home from the hospital, we were listening to Amy Grant's song If You Can Only Imagine. For those of you who don't know the song, it basically talks about what being in heaven and meeting Jesus would be like. This song used to always really touch me and put a real yearning in my heart for Jesus. But yesterday as we were listening to it, I realized that since Rachel went to heaven, when I think about heaven these days, I yearn more to see her than to see Jesus. I realized that I have really sinned against our Lord by placing more importance on our babies than Him so I immediately confessed my sin and ask for His forgiveness. I am so glad that our Lord is such a forgiving God. Its amazing how I think I surrendered everything to Him one day and I start holding on too tight again the next day. I guess this is another day to day struggle and I just have to really stay on my toes and look into my heart more carefully.

Anyway, its getting late so I will sign off for now. Take care and good night,

Sonia

Isaac is 3 weeks old! (26 weeks gestational)

Hi Everyone,

I hope this post finds you well.

Today marked Isaac's third week since his birthday. I can't believe so many days have flown by already. At the same time, I can't believe it has only been three weeks! We're praying for His patience and ability to focus on each day's walk with Him and Isaac.

Isaac's heartbeat and oxygen saturation were more stable today. Our doctor mentioned that he was also stable last night (amen!). They are continuing to give him steriods but they did stop giving him one of two blood pressure medications they had been administering. If he's stable tonight, they will stop the second one as well tomorrow.

We're just hoping that they can stop the steroid injections as it requires them to put two IVs in and the one for the steroids in his arm seems to hurt our poor baby a lot. He seemed to cry and cringe again today everytime we tried to move his arm with the IV.

While we felt both helpless and pained witnessing Isaac's suffering, we were at the same time grateful that Isaac was aware and responsive enough to so clearly communicate his dissatisfaction with his current burdens. Hopefully, his condition will improve quickly enough for them to pull his IVs out in a couple of more days.

We also officially asked whether we could spend a little more time with Isaac during the weekends as we discovered something interesting - if a mother and father come to visit at different time, each parent gets one full hour with their baby! Under the normal rules, you get one hour a day. This makes no sense and the nurse we asked fully agreed and apparently they are discussing this along with changing the visitation rules to permit 24 hour a day visits (like some of the better NICUs here). We were denied of course. We have been preparing to find a new NICU for him so this is just more incentive for us to do so as soon as Isaac becomes stable enough.

Sonia is busy working on our testimonial that we will be giving this weekend. The sermon will be on the second beatitude about mourning and comfort. We were originally thinking of having a larger memorial service for Rachel but somehow it feels more appropriate to remember and honor her this way. While I will be working on it with her, I think it would be best if Rachel's mommy did all of the talking this time (that's probably for the best anyway - I can't seem to stop crying when I talk about Rachel or Isaac).

Good night and God bless,

Jong

Quick Post

Hi all,

Jong and I went out to dinner just the two of us for the first time since I was admitted to the hospital tonight and we had a very nice long talk about all that happened. Anyway, after dinner and pumping, I konked out and just woke up and finished my late pumping session so I thought I'd do a quick post about Isaac's condition today.

The doctor actually wrote down a few things in English so we could understand him a little better today. Apparently, Isaac's problems/instability the last couple of days was due to blood circulation problems - which caused low blood pressure, which also affected his breathing and his kidney functions. After we left yesterday, his condition worsened again so the doctor decided to treat him with a low dosage of steroids as well as glucose and insulin. After putting Isaac back on IVs with the above, he stabilized again. When we saw him today, his numbers stayed solid and stable the entire hour we were there.

The only thing was our poor boy had 2 IVs in him - one on his right arm, one on his right leg and his other left foot had a monitoring sensor on. Since he likes moving a lot, this was really difficult for him. We could see he really wanted to move his right arm but every time he moved it, it must have hurt because he would really frown or he looked like he was ready to cry. Boy did it break my heart. But we are very glad that he stabilized since if his poor blood circulation is not treated, the risks of PVL and Cerebral Palsy would increase.

Because of his problems, they also decreased his feedings back to 8ml per feeding. But he seemed so hungry! They gave him a pacifier and he was really chomping away at it! Hopefully, Isaac stayed stable after we left and they should go back up to 9 ml tomorrow!

Isaac is so brave - we are humbled by how hard he is struggling to stay alive and healthy. Compared to him I feel like such a wimp - the last week of my pregnancy, I was on increasing dosages of drugs to help stop my contractions, which also caused me to feel sick, and I also couldn't move from lying flat on my back (if you have been pregnant, you will understand how hard it is to lie flat on your back without moving with a big pregnant belly) as moving caused more contractions. I was so uncomfortable - at times I didn't think I was going to make it. But that was only for a little while. I just pray that Isaac got a much stronger spirit from our Lord than me as he has such a long way to go.

He is also so cute. Its funny because when I touch him, he would stay asleep but when Jong starts touching him, he would usually wake up. Even though Isaac is really tired, he would open his eyes a little bit as if he was trying to see what is going on, close his eyes again to rest, and then open his eyes a little bit (imagine when you try to peep open your eyes when you are really tired) and so on. It is just soooo cute! Jong gets so excited every time Isaac opens his eyes and peeps at him (even though the doctor said Isaac can't see it, its hard to not think so with his eye movements!)

In any case, I better go back to bed now. Take care and God bless,

Sonia

Blessed are the poor in spirit, for theirs is the kingdom of heaven

Dear all,

I went back to our church, Tokyo Baptist Church, for the first time since before I was admitted to the hospital at the end of February today. It was truly like coming home. It was so good to see everyone and truly humbling to see all the church members who have been praying for this little family. Its amazing that despite the size of our church (regular attendees of about 1,300 people, with 5 services), our church really feels like our close knit family. How amazing is it that if you are part of the Christian family, when you are in need, you can call up thousands of Christians brothers and sisters, not just from our church but also from all over the world, and they will pray for you with all their heart?

The sermon today was so timely and appropriate. It was about the first Beattitude - "Blessed are the poor in spirit, for theirs is the kingdom of heaven" Matthew 5:3. Pastor Dennis explained that "poor" in this context does not mean poor or lacking in material things or humility or meekness, but poor as in beggar. Basically the verse means that blessed are those who are totally destitute in front of God and who have total dependence on God. We need to totally renounce our lives and be totally dependent on God.

I realized during the sermon today that since our babies were born, I have started holding on to too many things again. I started holding on to Rachel too much, Isaac waayyyy to much and my broken heart, my grief, my "why's"... the list goes on. Somehow, it seemed so hard to surrender everything to God, especially Isaac. But at church today, I realized that it really wasn't so hard. I just had to let go. Isaac isn't really ours anyway, like Rachel wasn't really ours. Our Lord just placed them in our care for the time when they are on this earth so we are just God's stewards of Isaac and Rachel. Its an extremely important job that God gave us but ultimately, we are just doing it for God, and not for our own gain. So today, I tried to surrender everything to our Lord again. Doesn't it feel good that we have an almighty God who can take all of our burdens off of our shoulders? I know I will probably need to reminded to surrender again and again. So please feel free to pipe up and remind me if you see that I am starting to hold on too tight again.

Isaac was more stable today. Apparently, yesterday, apart from his oxygen saturation levels fluctuating a lot, his blood pressure was also down and he started urinating a lot less. The doctor decided to put an IV back into him and gave him medicine to improve his blood pressure and that seemed to have stabilize things for now, including his oxygen saturation levels. He said that if things become unstable again and the blood pressure medicine doesn't work, he might have to give steroids to Isaac. As there are side effects from using steroids that might complicate things so we are praying for a miraculous healing of his CLD and his low blood pressure.

Isaac was face up today so we were actually able to see his growing belly - a sweet sight to his mama and daddy. He is now getting 10 ml of milk per feeding. That will be the maximum level for him for a little while. We pray that he will continue to grow and gain weight so that he can start taking even more milk. While we were there, he actually had a little throw up, which surprised him and woke him up -- and he opened his eyes again. This time even wider than the day before and it really, really seemed like he was looking at us because his eye balls followed us a little when we moved. We held his gaze for a little while - we don't know if he can really see us but its sooooo sweet to make eye contact with our precious little boy!

Thank you so much for your prayers. We will keep thanking you for your prayers but keep asking you to pray more. Just like we will never stop begging our Lord to protect Isaac -- because we are destitute in front of our Lord - when it comes to Isaac, there is really nothing we can really do for him except to pray for him.

Take care and we hope your Sunday was/will be as blessed as ours was.

Sonia

26 grams, Open Eyes and Continued Breathing Scares

Hi Everyone,

Sonia and I hope that all of you and yours are well.

We visited Isaac again today and it was another day of highlights and moments of almost utter panic.

First the good news. The doctors have Isaac up to 9ml per feeding! They reweighed him today and as of this morning he was 525 grams - up 26 grams from 499 grams just this past tuesday. We were so happy! They also measured him and despite all of his challenges with weight, he has actually grown in length from 30.8 cm at birth to 32.4 cm. Thank you Lord!

Isaac opened his eyes even more today. I know he can't really see his mommy and daddy but I could have sworn that he was looking right at us! It almost seemed like he moved his eyes around looking for someone or something to focus on. I know there may be issues with his retinas especially now that they have increased his oxygen because of his CLD but his eyes are really so pretty. Thank goodness that Isaac got his mother's eyes.

Isaac was also willing to hold daddy's hand again today. What a grip! If you look at the picture to the right, you can even see the whites of his knuckles!

Sorry folks but most every picture we have for this posting is face down, froggie style, because the doctors think this position is better for hi his digestion and maybe breathing. You'll also note that a few of the pictures have him pretty snug to prevent him from moving around too much. Again to help avoid breathing tube problems.

He seems to be eating ok as well. He has been off of antibiotics for a couple of days now and has been able to have bowel movements without an anema for the past couple of days.

It is so great to spend even our little hour with him every day. I so wish we could spend more. Unfortunately, today was at times more frightening than yesterday. Isaac is having even more difficulties with his breathing. He seems to suffer from apnea quite frequently and his oxygen saturation level seems to crash all of the time now. The nurses say that it is much worse just after feeding perhaps because of the milk in his tummy. Either way, Isaac was having major trouble when we visited. His saturation percentage would fall into the low 70s and they at times were manually pumping oxygen into his lungs, first with the ventilator and then literally manually with a squeeze bulb. They also changed his breathing tube yesterday in the hopes that it would help. Our poor little boy looked a little worse for the wear as he seemed really tired and a little listless.

The doctors keep telling us that he's ok and none of this seems to be a big surprise to them. Of course as his parents and being first timers with something like this, we have a hard time just keeping our hearts in our chests everytime our little boy struggles like this. I almost wish that they didn't have so many monitors because it is really stressing us out to hear the constant alarms and to see the square breathing signals that tell us when the ventilator is 100% breathing for Isaac because his system has forgotten.

In addition, while again the doctors don't seem so worried, his heartbeat is up from 160 to about 170 and his temperature is up a little as well. They tell us that it isn't because of an infection but I don't think they are good nevertheless. I'm so happy that Sonia and I have gotten into the regular habit of praying openly with our Isaac so that we can affirmatively and publicly lift him up to the Lord for His care and mercy.

I think that God knows how fragile Isaac's mom and dad are. Maybe that is why, in between these problems and bouts of apnea, Isaac will perk up for a little bit and open his eyes again searching for mom and dad. When he does I completely forget about everything else!

He's also still coming up with the cutest little poses. We call this one the "Thinker" after Rodin's sculpture. As a couple of you have mentioned in your posts, Isaac has discovered the entertainment value of this breathing tube. Bad boy!

All in all, we know deep in our hearts how fortunate and blessed have been so far with Isaac. He has problems but we know that things could be much worse and many of you have had much more traumatic experiences this early.

We are trying to figure out the best way to start looking into alterative NICUs that could take Isaac after he gets a little bigger.

Thank all of your again for your continued prayers. We know in our hearts that a major reason Isaac is with us and is still hanging in there is that He is listening to your prayers.

God bless,

Jong

Chronic Lung Disease and we saw Isaac opened his eyes!!

Dear all,

I guess its inevitable but Chronic Lung Disease (CLD) has arrived for Isaac. Isaac's oxygen saturation level has decreased so they are giving Isaac more oxygen. The doctor and the nurses are monitoring him pretty closely as they don't want to give him too much oxygen, which may cause ROP (retinopathy of prematurity) in his eyes.

Jong and I also saw Isaac opened his eyes today. It was a bit scary to have him open his eyes so early. He still can't open his eyes widely but we saw both his eye white and his iris. He was definitely trying to open his eyes widely though.

He is up to taking 8 ml of milk per feeding today. He is apparently digesting all of it and is even able to poop on his own without extra help - twice a day! We are really hoping that with 8 ml of milk per feeding, he can really start gaining some weight. The doctor keeps saying how things will improve for him when he gets to 1 kg - his CLD will probably get better then and they might be able to try taking him off of the ventilator, etc. So I really hope he gets to 1 kg soon. They will weigh him again tomorrow morning. I hope and pray that he gained some weight since his last weigh in.

All in all, he looked pretty good today. He was on his tummy again today. The nurse said its better for his heart and his digestion for him to be on his tummy. I think he really likes me touching him (not to sound too cocky) because his oxygen saturation levels almost always improve when I am touching him (I do what is called a "firm touch" - basically putting my palm or my fingers on him firmly without moving too much - as I read that soft featherly touches are not good for him as it overstimulates him). For some reason though (probably because Jong can't resist brushing Isaac and my hands are softer than his), when Jong touches Isaac, his oxygen saturation levels don't do so well. LOL.

Today, we were both touching Isaac at the same time for a while. I was cupping his back with my right hand and Isaac was grabbing Jong's left hand pinkie. It was so cute as Isaac was holding Jong's pinkie pretty tightly!

We just have a few more days before Isaac reaches 3 weeks old (and 26 weeks by gestational age) next Tuesday. The doctor kept saying that the first 3 weeks are critical and we are praying hard that Isaac will remain stable for the next few days.

The doctor also took Isaac's IV out as he has been stable and has shown no signs of infection. Please continue to pray that Isaac will be protected against infection. Please also continue to pray for his lungs and his eyes.

Isaac has been such a good and brave little boy. We really feel like God is surrounding him with His angels (at least that is what we keep praying for). We also pray for the Holy Spirit to keep whispering to him so that his heart can be filled with God's love and our love. Because we are allowed to see him for such a short period of time, we really have to have faith that the Holy Spirit is talking to Isaac and helping Isaac connect to us so that he knows we are his parents and we love him very much.

We can't wait to see him again tomorrow - hopefully, finding out that his weight has gone up!

On a side note, I have been missing Rachel more and more these days. Its taking me a lot longer to grieve her. I miss having both her and Isaac safe inside my tummy when I could feel them, talk and sing to them whenever I wanted. It was very nice to feel like I have most of my family with me inside me. Its weird to have them taken out of me so early. It feels a bit lonely to just be me again without them inside me. If you know what I mean.

Anyway, I am getting pretty sleepy (and I have to stay awake for my pumping sessions!). Thanks for all your prayers and please do continue to pray!

Hope you all have a great weekend.

God bless,

Sonia

Isaac having slight breathing problems

Dear all,

During our visit today, our little Isaac had some problems with his breathing. They had him on his tummy today and it seems that when he moves around, it affects the position of his ventilation tubes and his oxygen intake level would drop. There were a few times his levels really dropped and his heartrate went really low. It really scared both Jong and I. I have been praying all afternoon for his breathing, his lungs and his little heart and I called the hospital this evening to see how he is doing. They said that his breathing is okay when he is sleeping but not so good when he is awake (and probably moving). Please pray for his breathing, his lungs and his heart-- as you all know, so many things can go wrong if he is not breathing properly.

Sometimes I get so scared for him. I really should have more faith. I know everything is in God's hands and I need to accept His will but its almost impossible for me to not to want Isaac to have a good quality of life and not have any major problems. As a parent, it is very hard to say, Lord, its okay if Isaac has to suffer if its in your will. All I know what to do right now is to fall on my knees in front of our Lord and beg and beg Him to have mercy and compassion on Isaac and for Him to let Isaac develop well and have a chance at a normal life like other normal babies.

On the bright side, Isaac definitely had filled out more on his back compared to a few days ago when they had him on his tummy the first time. A few days ago, the skin on his back was all wrinkly and it was obvious that he had too much skin and not enough flesh. Today, his skin was not wrinkly anymore so he has filled out. They were e feeding him 7ml of my milk per feeding today.

Jong and I also think we found our next apartment. It was exciting looking for a new apartment and imagine setting up Isaac's room and bringing him home to it. I really can't wait for that day!! I also CANNOT wait for the first time I can kiss our precious little boy.

I will be returning to work on May 1, working from home mostly. I know a lot of people have been telling me not to return to work so soon but I really want to preserve most of my maternity leave for when Isaac comes home. Working from home won't be so bad and I think it will be good for my psyche to work. Chiori - fortunately or unfortunately, I am not on the Japanese system as I am hired out of the U.S. and here as an expat so all my U.S. based benefits (so I was able to go on disability when I got hospitalized).

Doni, we did ask about leaving a tape recorder to play our singing to Isaac while we are gone but the hospital won't let us.

This reminds me of another prayer request - we are still thinking about moving Isaac. We keep hearing that Kokuritsu has the best NICU in Tokyo and we also heard that it allows for visits by parents 24 hours a day. My OB-GYN doctor, Dr. Sakamoto doesn't think any NICU will take Isaac until he has completely stabilized and is ready to graduate to the big boy NICU section, which from what we have been told may not happen till his due date. We are praying for God's guidance and for Him to open and close doors for us. We don't want to risk Isaac's health with the transfer but we also want him to be in the best NICU possible.

Thanks for all of your prayers,

Sonia

A Good Day Today

Dear all,

Today was a good day. We went to see Isaac and he looked better (and extra, extra cute) to both Jong and I. He was sleeping quite peacefully during our entire visit and seemed very comfortable as we touched him. They did increase his feeding to 6 ml per feeding and the nurse said he was able to digest the milk. They also took the bandage out from his belly and we could see his belly button! Jong and I now sing to him quite a bit each time we are there and Jong tries to sing harmony sometimes. We think Isaac really likes it when we sing to him. Jong and I have to try harder to memorize lyrics for more songs though!! We sing a mix of children's bible songs, hymns and contemporary Christian songs to him. The nurse also said he opened his eyes. We don't know if we understood her correctly since her English wasn't very good. We saw him trying very hard to open his eyes but didn't open his eyes yet. We really pray that God will protect his eyesight and help him develop his eyes properly.

Our little boy has really grabbed our hearts - both Jong and I can't stop thinking about him and sometimes we start grinning or smiling thinking about him because he is oooooohhhhhh sooooooooo cute!

On another note, I went to see Dr. Sakamoto today to get my thyroid levels checked. It was really nice seeing him again. I really think he is a great doctor - very caring. I wished he was the doctor who did my C-section (Jong said my cut is crooked). Anyway, Dr. S checked me and said that the Toho U. doctors did a decent job. He did take out all the tape the Toho doctors put on my cut saying that the tape could trap a lot of bacteria. I personally thought it was weird that the Toho doctors want me to leave the same tape on for a whole month - it didn't seem very hygienic to me so I am glad Dr. S took it out.

On the emotional side of things, I still have quite a bit of ups and downs. Well, not really ups as I don't think I have felt that happy for quite a while so I guess its more like I have flats and downs. I guess part of it might be hormonal. I also still feel very exhausted emotionally. I haven't seen a lot of people yet but when I do, it takes a lot of effort to smile - and when I do smile, it is quite forced. I do smile when I see and think about Isaac (especially when he does something really cute) and of course, Jong can still get me to smile whenever he wants. Hmmm, now that I think about it more, I actually feel really blessed to have two boys who have stolen my heart and can make me smile whenever they want.

May our Lord bless each of you with many blessings and smiles,

Sonia

Isaac's Lost 22% of His Birthweight!!!

Dear all,

Isaac looked a bit better today and the doctor said Isaac is stable. Now that the IV is no longer going through his little belly, the doctor decided to have him sleep with his body facing down for a bit - as that supposedly help him digest my milk better. It was the first time for me to see his back and his butt. Poor little boy, he is so skinny and there is no meat on his butt at all!

They were also finally able to weigh him for the first time. He weighed 641 grams (around 1.4 lbs) when he was born but today, he weighed only 499 grams (around 1.1 lbs). He lost 22% of his weight!! So it wasn't Jong's and my imagination that he was getting really skinny. The doctor thought Isaac's weight was probably lower a few days before but started stablizing and gaining a bit since then. I think we agree because he doesn't seem as extremely skinny as a few days ago (when Jong and I both started panicking because he looked like he was being starved to death). They are feeding him 5 ml of milk per feeding today (8 feedings a day) and will try to increase it to 6 ml tomorrow (they used to increase by 0.5 increments but since he seems to be doing well and they want him to start gaining weight, they are going to try to increase by a larger increment). Please pray that he is able to digest all the milk and the increase in milk will not cause any problems with his digestive system but that he will actually start gaining more weight.

After a conversation Jong had with our insurance company's doctor, we are now thinking whether it makes sense to move Isaac to a different NICU - hopefully a more progressive one and if we are lucky, one with a Neonatologist we can communicate in English with and that is closer to home. We really don't know what is better so we are just praying about it right now. Pls pray for wisdom and guidance on this matter as well.

Today is Isaac's 2 weeks birthday (and he reached 25 weeks based on gestational age). Jong and I are very, very thankful to our Lord that Isaac was able to avoid any major problems during these critical first 2 weeks. We are praying and hoping that the next two weeks will be the same -- hopefully non-eventful and that Isaac will continue to be able to digest all my milk and grow. How my heart yearns for the day I can hold him on my chest and give him kangaroo care, and then the day we can bring him home.

I am also thinking of going back to work soon. I want to preserve the remainder of my maternity leave for when Isaac comes home. Plus I have been gone for so long and I know my boss has been getting so swamped. It will be interesting though - I will have to be the queen of efficiency between the breast pumping every 3 hours and the daily visits to Isaac (it takes us a total of about 3.5 to 4 hours every day).

Thanks as always for all your prayers and comments. Jong and I continue to be humbled and amazed by all your love, prayers and support.

God bless,

Sonia

Isaac's First Scare

Dear all,

We went to visit Isaac this afternoon and learned that Isaac had his first big scare yesterday evening. His IV has been connected through his umbillical cord since he was born. Apparently, last night, the attending doctor noticed that the IV was no longer secure and may fall out unexpectedly so he decided to take the IV out. Unfortunately, after he took the IV out, Isaac wouldn't stop bleeding despite applying pressure and other usual methods. They eventually got the bleeding to stop but he had already lost quite a bit of blood.

When we saw him today, he looked soooooo exhausted. Our poor, poor baby. He also now has an IV connected to his leg. My heart just broke for him. Because of my struggles with IVs during my 5 weeks of bed rest and then 1 week of post surgery recovery, I know just how much IVs hurt and it breaks my heart that he has to go through that pain. Unfortunately, the IV on his leg probably won't last that long because of his regular movements. Please pray that the IV last as long as possible for him. Also, because they took the IV out of his tummy and the bleeding, his risk of infection is higher right now so please pray for protection against infection as well. Finally, he is already anemic so this really didn't help, so please pray that our Lord will help our little Isaac produce more red blood cells on his own.

The doctors don't know why he couldn't stop bleeding. As far as Jong and I know, we don't have any family history of hemophelia so we really don't think that could be the reason (and hope and pray that that is not the reason). They had to stop his feeding after all this happened last night but started back up again but at 4.5 ml per feeding today. They are really hoping that he could get up to 8.0 ml per feeding sometime next week (they will try to ncrease the feeding by 0.5 ml per day) and if he is able to digest all my milk at that level, they will probably take his IV out until he needs it again for various reasons. He still needs a little help (anema) to poop properly. But Isaac's doctor said everything was basically stable after what happened last night.

He still looks really, really cute though he looked so exhausted. Its really, really tough watching him suffer like this. Its hard not to wish that he was still happily inside my womb instead of having go through all this.

I know God is in control and everything that happened was and is in accordance with His Plan. But its so hard to see my fragile little baby suffer. I wish I could somehow take the pain and suffering on little Isaac's behalf. There is basically nothing much I can do exept pray and I think that's exactly how God wants it -- for me to be completely helpless except for praying and asking for His mercy and compassion on Isaac.

The one disturbing thing though was that the hospital never called us last night. I hope its because it wasn't really that serious and they had everything under control. I am just a little disturbed that they didn't tell us till we got there this afternoon. I guess I just have to really constantly be praying for my little boy because something could be happening to him without my knowing! I actually woke up this morning, I think from a nightmare, and I was more worried about Isaac than usual. Jong said he also had a heavy feeling in his heart on our way there.

I was crying when we were with Isaac in NICU after the doctor told us what happened because my heart was hurting so much for our baby boy. I know this was probably nothing and we have a long road ahead of us. I need to toughen up!! Its so tough for me - last year, our friend's son fell off of the sofa while we were all having dinner and he hurt himself right next to his eyes. His heart wrenching cries made me almost cry and he is not even my own son. I always knew it would be really hard to see my own child suffering but never imagined it would be this hard.

Anyway, Isaac would have been born 2 weeks tomorrow so I am really looking forward to celebrating his 2 weeks birthday (and 25 weeks gestational age) with him tomorrow.

Take care and thanks for all your prayers,

Sonia

p.s. Andrea - Jong and I used to go to Redeemer as well when we lived in NYC as well. Dr. Keller is the best - I still download his sermons and his sermons were a lifeline during my bedrest!

Meet Isaac!

Hi Everyone,

Sonia and I have finally gotten up the courage to post Isaac's first picture on our blog. Sorry, it is just a head shot. He's still so skinny and bruised from all of the poking, we didn't think it would be a great idea to post full body pics quite yet.

We took a look at his newborn pictures and it is amazing how much leaner he looks now (but with more hair, and I think he is definitely cuter now).

He was sleeping pretty well today. They had some new wire contacts on his chest today to get a more accurate read of his breathing and heartbeat (probably because they took him off of his blood pressure medicine which has caused it to go down a bit).

He was taking 5ml per feeding today but apparently his disgestion isn't consistent yet so sometimes they have to back off and/or perform an baby anema. They are also giving him something to help him pass food through his intestines.

In any event, Isaac looks like he's resting well enough and that he is getting close to being able to gain weight just on his mother's milk. We can hardly wait to see him tomorrow.

Blessings,

Jong

Thank you so much

Hi Everyone,

Sonia and I just finished reading your comments to our last two posts and we couldn't help the tears from pouring out. But this time, they weren't just because we miss Rachel so much or because we are worried about Isaac but because we feel so blessed to be in all of your prayers and for the wonderfully touching and encouraging messages. Reading about your experiences gives us so much - hope, faith, strength, proof of His mercy and love. Honestly, so many of you have gone through so much more than Sonia and I that we are a little embarrassed that we can't seem to handle the abundance of blesings and miracles He is showering upon our family a little more gracefully.

I do think it is really important for parents to go through the grieving process and I am thankful that He is walking with us through that journey. As Sonia mentioned, seeing Isaac is the highlight of each day for us. Perhaps as a result of hearing from so many of you, we find ourselves not asking the doctors so many questions anymore. I personally am not that inclined to hear anymore worst case scenario "facts" regardless of their likelihood as I do need to focus on enjoying each mercifully healthy and uneventful day we have with Isaac. Whether it is 72 hours or 10 days or 10 months, with your help, I think I've been able to regain my sense of perspective. No matter what, my son is a most precious gift from Him and He has entrusted us to love and care for him. We have every confidence that He will continue be with us and to give us the ability to shoulder anything that comes our way.

Sonia and I have started praying together with little Isaac during our visits. We take turns touching him while praying and lifting him up to the Lord. Rachel seems so much closer when we do this (the incubator she was in is actually right next to Isaacs). It is such a remarkable gift to be able to pray with your children.

Sonia also wants to thank everyone who sent email messages to her over these past weeks. She is really sorry for not responding yet but she promises to do so shortly now that she is back home and recovering.

Thank you and God bless you,

Jong

Being home...

Dear all,

I just finished expressing milk at this late hour and wanted to post something before I go to sleep.

Its hard to express how I feel but I guess I can say I have been feeling more depressed since I came home. I mean, it is really, really great to finally be home and be with Jong again. We hardly had anytime together since my surgery while I was in the hospital. But on the other hand, I feel so empty being home without my babies. I think back to last when I was at home before all this happened and it seemed like such an naive, idyllic time back then. Now, EVERYTHING has changed.

I think I am the type of person who freezes when crises happen and then it takes a while for what happened to hit me. And everything started really hitting me after I got home. Its not just the loss of Rachel and the fact that our poor little Isaac is in NICU, stuck to all these tubes, with only skin and bones, without mommy and daddy with him. Its also the whole ordeal, from the discovery of the incompetent cervix, to Rachel's sac rupturing, to the weeks of bedrest praying and hoping and then the horrible days of contractions, hospital move and emergency C-section. I feel empty and numb inside.

Its especially hard when I am expressing milk. Because when I am expressing milk, it makes me really want to be able to hold Isaac (and Rachel too) to my chest and feed them. And it makes me miss Rachel soooo much. Apart from expressing milk, its hard feeling like a mommy -- how do you feel like a mommy when you only see your first and only son for an bour a day?

Satan has been trying to do a number on me. Putting lies in my head. I know they are lies but they still hurt. My heart just feels so raw and numb, it hurts too much to let myself feel too much. And I feel more distant from God then before. I know He is watching us and blessing us by allowing Isaac to be stable. But somehow I feel like I am in a dark vacuum. I know all this will pass and I just need to keep praying and reading our Lord's word and He will somehow heal my heart and my broken soul. I guess I just feel mentally very, very tired.

On the bright side, Isaac is still stable. They upped his milk intake to 4.5 ml a day and apparently he is digesting it. Seeing Isaac is both Jong's and my highlight of the day. It takes a long time to get there and back but it is sooo great to see him. He is just so cute -- seeing him each day makes me think God's creation is so great. Unlike Jong, I do not think any of the dreaded complications are inevitable. I don't know if its because I am a mom or I am hiding my head in the sand, but I just am not able to let myself think that things can grow really wrong for him. I know there will be bumps ahead on his journey but I somehow think that he will come out alright eventually. And I pray and beg God to allow this to happen as often as I can.

In any case, its almost 2 am now and I better go to sleep. Sorry for the depressing post. Today is Easter Sunday so I should cheer up!!

Happy Easter everyone.

Take care,

Sonia

Isaac is up to 4ml per feeding, CLD soon?

Hi Everyone,

Happy Good Friday.

Just a quick note. Sonia is sleeping already. Today was her first full day back at home and she was pretty exhausted by the end of the day.

We saw Isaac again today. He seems stable and his milk per feeding is up to 4ml now. but there doesn't seem to be any appreciable increase in weight yet. Good thing I'm not a farmer or gardner - I have so little patience!

He has started to have some problems with his bowel movements on occasion but apparently an enema fixes the problem. The doctor said that his lungs were not too bad yet but that chronic lung disorder will likely start pretty soon based on his experience. He also mentioned for the first time that they expect to start seeing signs of PVL in his brain over the next couple of weeks. He doesn't seem to think that Isaac will be able to get off of his respirator for another few months and that his oxygen level will likely have to go back up.

But there are no signs yet of that or bleeding now so we'll just have to keep taking it one day at a time.

I have to admit I felt a little down today after meeting with the doctor (although the doctor didn't mean to do that at all). Isaac just seems so peaceful and responsive these days and after what seems only like positive progress, it is hard to accept that deterioration that will change all of that is inevitable. I guess the worst part is the waiting - I'm so afraid that we'll have a repeat of what happened during the pregnancy - everything seeming great for weeks only to have something pretty disastrous happen.

It is amazing how little faith we have sometimes. It was pretty obvious that I was feeling out of sorts as Sonia kicked my butt on the way home. She's mentioned how important it is for parents not to give up on preemies. Of course I'm not giving up on him - I just don't like folks accepting the inevitable I guess and I guess I'm not used to feeling helpless. But perhaps that is just what He wants me to fix.

I do have to thank those of you who have posted about their preemies who have had to deal with all sorts of complications. The fact that your kids are thriving despite it all does give us great hope.

On the way to see Isaac, played "Jesus Take The Wheel" and we started sobbing uncontrollably as we listened to it often while we were at the hospital with Isaac and Rachel. I think I'm going to need a little more practice getting out of the driver's seat.

Blessings,

Jong

Pls tell us where you are

I am trying to see if I can get an rough idea of the number of people who have prayed for Rachel and Isaac and are praying for Isaac still and where everyone is from. If you have said a prayer for this family, can you please go to this page and indicate where you are from? Please also pass this weblink along to your friends who you have asked to pray for us.

http://www.frappr.com/prayerwarriersforisaacandrachel

Thank you very much. I hope to use this information for Rachel's memorial (date not yet set) -- I think it will be a huge encouragement for the Christians here in Japan (and hopefully at least a few non-believers who might be encouraged to join this wonderful, wonderful family of believers.

Sonia

I am home!

Dear friends and loved ones,

I wanted to drop a quick note -- I was discharged from the hospital this afternoon can finally came home. Homecoming is quite bittersweet as when I last left our apartment, I never imagined the events that would follow (I thought I might have a shortening cervix and needed a cerclage but everything wouldbe okay) -- and I still had Rachel and Isaac inside me, with Rachel happily still in her sac filled with water.

I miss Rachel so much I cannot express in words. But I feel very blessed and humbled that God has seen fit to let Isaac to continue to stay stable and he seems to improve a little bit when we see him each day. I honestly don't know whether I can handle it if Isaac was not doing well right now. Good thing our Lord is such a merciful and gracious God. We saw Isaac before I left the hospital. They are now feeding him 3 ml of my milk per feeding (I think they do 8 feedings a day) and so far he is digesting everything well. He seemed a bit more active today but we weren't sure whether it was the increased milk intake or because we went at a different time (1 pm as opposed to 4 pm).

Its really amazing. I mean, Isaac is such a tiny little baby and he is still basically still all skins and bones but he has the cuuuuuuutest little face!! My heart flips every time I see his sweet little face.

On another front, our good friend Ai has been posting questions on a Japanese premie board for us and we heard encouraging news that people do think that the NICU at Toho University Hospital is a good NICU and that the doctors there are very supportive and do listen to patients/concerned parents. This confirms our experience so far. Before we met with the doctor a couple of days, both Jong and I were expecting what we thought was the typical Japanse "sensei" (could be doctor or lawyer) treatment/attitude towards patients/clients, etc. A lot of "sensei's" feel like they know best and do not like to be questioned and do not like to explain. But that was totally not what we experienced and we are just so grateful to our Lord and all of your prayers.

In any case, I will try to post more tomorrow when I have more energy as the discharge was a bit tiring for me. Hopefully, my thoughts that I post tomorrow will be more cohesive.

But before I go, I want to really, really thank all of you for all of your prayers and support. It has been a tremendous source of strength and support for me. Every time I even doubt why all this is happening, I can see the goodness of our Lord through all of you.

Take care and God bless,

Sonia

Our meeting with Isaac's doctor

Dear Brothers and Sisters,

Again, all of your prayers made a difference today. While I don't think we got the result that we were expecting or hoping for, it seems pretty clear to us that He really wants us to trust Him and to appreciate how much he has blessed Isaac thus far.

It was raining today and traffic was simply awful. Why do the Japanese put the biggest buildings on the smallest streets!!!! Being an impatient LA commuter, I tried my very best to resist my natural proclivities and be patient and calm but it was so hard! It totally seemed like a conspiracy to test the limits of my endurance. My 45 minute drive ended up being almost double that which caused us to be seriously late for our meeting with Isaac's doctor. Of course, there wasn't any nearby parking when I got to the hospital. Thank God that I had a Japanese friend from church (to translate) and my mom in the car as I think I would have had a much harder time with my temper otherwise. Add to that the daily burro ferrying of clothes, water, moist towels, etc... (as a public hospital, you have to pretty much buy your own everything - sort of like a mexican jail!) and heavy plastic bags ripping from their weight and I was completely off my game by the time I finally reached Sonia's room.

All I could think about was how my 23 week old son had been wrongly starved for a week, how he was all skin and bones now looking like something out of a holocaust film and increasingly less active. I all could hear in my mind was Sonia's quiet yet heart wrenching weeping over the phone prompted by the sudden possibility that our lack of preparation to be an effective advocate for our son might have somehow already allowed a critical and potentially irreversible crisis to develop and threaten Isaac's wellbeing.

But He was so in control! I felt like he wanted me and Sonia at our very worst, vulnerable and unprepared so that his glory would be so obvious even to fools like us.

First, He made sure that we didn't have to struggle with language difficulties or risk personally offending Isaac's doctor (by challenging his chosen course of treatment - welcome to Japan) over such an important issue. We were so worried about this, I took a Japanese friend's entire afternoon away from him to translate for us. It turned out that Isaac's doctor had done a 24 hour shift and was not in today. In his stead, we met with his colleague, a Dr. Kawase who not only speaks very good functional english but was also the doctor that tried to save Rachel for us. This was a huge break. Dr. Kawase was actually the doctor who mentioned TPN before. He is also the more progressive of the two (probably more senior and I'm guessing some clinical experience outside of Japan).

Second, because I was late, we ended up visiting with Isaac for an hour before we met with Dr. Kawase. While he still looked really emaciated to his daddy, we were given some guarded but good news. The nurse told us that Isaac's ventilator settings had been adjusted so that he was now receiving an oxygen level comparable to regular air (it was higher before) and that they were able to lower the dosage of his blood pressure medicine (his heart rate is back to around 140 bpm now). His skin was pretty dry and he seemed to be sleeping well. Isaac continues to enjoy his foot rubs and despite their warnings against it, I massaged his legs and arms and moved them around a bit.

On a blessed note, our nurse overheard Sonia singing "Yes Jesus Loves Me" and it turns out that she used to attend Sunday School in her home town! We're going to have to pray extra hard for her now.

Finally, when we were able to meet with Dr. Kawase, he already sensed that we were worried about something and, almost as if He simply spoke to Dr. Kawase directly, he came right out and asked us what was on our mind and how he could help.

We (politely) raised three simple points: (a) every premie parent and MD we have communicated with around the world have consistently and universally stated that IV nutritional support (TPN or some variant) should be used in mcro preemies this young in conjunction with efforts at feeding Isaac a little bit of her mother's milk; (b) what can we do to accelerate the removal of the ventilator as soon as possible to help Isaac's development and avoidance of chronic lung disorder and (c) whether there was any flexibility with the amount of time we could spend with Isaac daily.

Dr. Kawase readily acknowledged that TPN is used aggressively in places like the U.S. and elsewhere. However he said that this isn't the case in Japan because their experience / data shows two problems. First, the Japanese experience with TPN has been that it causes liver complications, especially in micro-preemies because it is much harder for them to absorb the lipids and amino acids that are in the solution. Second, the Japanese have had higher incidents of intestinal necrosis with TPN, again especially with micro-preemies.

Most importantly, he said that despite their experience, TPN would strongly be considered if Isaac wasn't doing as well as he seems to be so far. Isaac was started on his mother's milk at 0.5ml just 2 or 3 days after birth and is up to 2ml per feeding (still needs to get to 6-7ml to break even), he seems to be taking his mother's milk well enough and shows no sign of necrosis, is passing fluids and having bowel movements. The doctor believes that his weight has stabilized, partiallly because he isn't burning a lot of calories now. He felt that Isaac had a shot at getting up to 5-6ml per meal over the next week. Finally, he confirmed that their "natural" approach would not have any materially negative impact on Isaac's growth and development over the long haul.

Despite all of this, he asked us if we wanted to insist on TPN. As he wasn't Isaac's primary doctor so he couldn't order it himself but based on his explanation and Dr. Kawase's guardedly optimistic short term outlook for Isaac, we felt comfortable enough that the doctor's were doing what they honestly thought was best for him. It was also clear that they would put him on TPN if his progress did not continue. The transfer to the middle of nowhere, Isaac's ability to make it to week 24, everything is certainly according to His plan and I we believe at this point that He expects us to rely on Him to take us all of the way. Also, to clarify, they have had him on glucose IV since day 1. I know it isn't much additional nutrition but hopefully it helps a little.

We also talked a bit about the ventilator. Based on a few posts and some research, we understood that the best thing for Isaac was to be able to breathe on his own as soon as possible. Unfortunately, the doctor informed us that this is a function of body weight and that Isaac would need to get to at least 1 kg before they would consider taking him off of ventiliation. In addition, he mentioned that the assisted breathing would help Isaac avoid burning a lot of extra calories at this stage which is a good thing since he is isn't able to take in enough milk yet. Our primary concern was that the ventilator would increase the chances of brain hemorrhaging. However, we were pleased to hear that the doctor felt the odds of this happening had decreased given Isaac's progress. On the other hand, he suggested that the bigger long term issue is PVL periventricular leukomalacia and brain development. The doctor showed us a chest x-ray of Isaac and he said that the lungs were doing pretty good and there were no dark spots or anything. Again, I think we just need to keep praying that everything continues to move in the current direction.

Finally, we decided that we didn't want to push to increase the amount of time we got with Isaac each day until Isaac's milk intake level increased enough where he could burn more calories. As the posts and research suggests that what 23 week olds really need most is sleep in quiet space, we think giving him time may be best. When I'm there, I'm so excited about touching him that I am afraid I'll over do it anyway.

We pray that Isaac's condition over the next couple of weeks will continue to progress enough to allow us to focus on his longer term challenges - CLD, ROP and PVL. I know that sounds strange but we know micro-preemies can take a turn for the worse very quickly and we are not going to assume anything at this point.

Thanks again for all of your continued prayers and support. Your prayer, encouragement and informational posts have been really great. As I mentioned before, they've been a blessing to many others who have visited our blog site.

We aren't medically certain whether this course is the right one and we would appreciate your thoughts but we do feel like the doctors are treating Isaac based on what has worked for them in the past and that what is needed now is faith in Him as much as medical intervention on our part.

Blessings,

Jong

Your Posts, A Question About Isaac's Condition

Hi Everyone,

I just wanted post a short post this evening to give everyone an update on Isaac, ask a question about his current course of treament and to share a conversation I recently had with a good friend.

We had our daily visit with Isaac today. He still looks really think and perhaps has lost even more weight since yesterday. By chance, I received a call from a doctor with our insurance company who wanted an update on Isaac and Sonia. During the course of the conversation, I learned that micro preemies like Isaac are given a lot of nutrients via IV almost immediately in order to maintain and increase weight. This seems to be 180 degrees opposite from the current course of treament Isaac is receiving. Our doctor seems intent on allowing Isaac to lose a lot of weight and development time in order to rear him only on his mother's milk even though it may take weeks for him to start taking in the 80 - 100 ml a day he apparently needs just to break even. For those of you who have had a preemie, could you tell us whether your doctor provided lipids, amino acids, etc... via IV?

I know Sonia and I have repeatedly thanked all of you for your prayers, support and posts. With respect to the latter and those of you who have been generous enough to share your stories and experiences, I want to apologize for not mentioning this until now. Since we have been posting on this blog, we have received so many comments about how your posts have been a blessing and source of inspiration and encouragement to so many. We just thought you should know.

God bless,

Jong

A Small Prayer For Rachel, Isaac is Hungry!

Hi Everyone,

We hope that you enjoyed a blessed Palm Sunday.

Thanks again for your prayers, kind thoughts and your moving and informative posts.

Friday was a day of poignant reflection on both the miracle and fragility of life for Sonia and me. While we are thinking about a memorial service for Rachel after Sonia is discharged, we had a small ceremony in a tiny quiet room (abou 10x10) for Rachel at the hospital before she was taken to the crematorium. We hadn't seen her since Tuesday and she looked so beautiful, peaceful and delicate. The mortuary prepared a small white casket that we filled with a little teddy bear angel a small cross made of twigs, a little necklace with two hearts and lots of flowers.

Pastors Dennis and Takeshi were kind enough to attend to pray for Rachel and to share a short message. In addition to the pastoral staff and immediate family, some of the nurses to took care of Rachel and are taking care of Isaac came down to pay their respects. The nurses and doctors have been exceedingly kind to Sonia and me despite our language barriers and we are so very thankful to Him for that.

I don't think Sonia and I fully appreciated that we wouldn't see Rachel again until we joined Rachel by God's side until we saw her in her tiny casket. In addition, the service was one of the few times that Sonia and I had had to grieve together thus far. Neither of us were able to fight the feeling that we had failed her somehow and the guilt was a little overwhelming. We had to remind ourselves that God's plan for Rachel and for our family was still beyond our comprehension and that she was truly in a better place. We were grateful that Sonia's parents and my mother were finally able to spend time with her.

While we could have stayed in that room with her forever, we had to gather ourselves as our one hour visit with Isaac was scheduled just after Rachel's service.

To go from mourning for Rachel to celebrating Isaac's fighting spirit was a juxtaposition that He couldn't have planned better - for me anyway. While we will always have a place in our heart for Rachel, we were reminded that our grieving could not hamper our being there for Isaac.

He is still pretty active, kicking and swinging his arms. We think he must be dreaming quite a bit as he will suddenly twitch as if we was hiccuping. We hope to post a couple of pictures soon.

Our doctors say that he as stable as can be expected but they remain guarded. In particular, Isaac needs to be able to start taking his mother's milk very soon as he's losing a lot of weight. They've been test feeding at 0.5 ml but apparently Isaac needs to consume 80 - 100 mls a day just to get back to his birth weight. While still active, he does seem weaker and less energetic recently. Looking back at pictures I took of him on his birthday and ones that I just took this weekend, I am astonished at how much thinner he has become. It also hurts so much to watch him knawing at this tiny teething ring that they've given him because he must be so hungry! Fortunately, he still seems to really enjoy his daily foot rubs and the lack of calories seems to be encouraging him to sleep more peacefully.

Thankfully, his temperature is still stable and his skin seems to be thickening which is important to fight infection.

Sonia continues to recover. Her five weeks of bedrest has taken a toll on her leg muscles (which weren't that strong to begin with) so she is having mobility problems and now some pretty significant swelling around her legs, ankles and feet. The hospital is starting to feed her real food which is good thing and she is starting to produce much more breast milk.

Thanks again for visiting with us and for your continued prayers. Limited to one hour visits a day, I don't quite feel like a parent yet but I know Sonia and I are praying as hard as we can for just that responsibility and opportunity when Isaac can come home with us.

God bless,

Jong

Sonia, Isaac and Rachel

Hi Everyone,

On behalf of Sonia, Rachel, Isaac and myself, I would first like to thank everyone for the outpouring of support and prayer. I don't think I can reiterate how much your prayers have kept our spirits and energy up. We'd also like to thank everyone who has posted such encouraging and spiritually uplifting messages on our blog and on Hannah's Prayer. Thanks in particular to those mothers and fathers who have shared their experiences about their own pregnancies, tragedies and miracles. We know that Rachel and Isaac aren't the first premies to be born this early and we aren't the first family to experience this sort of loss and we are humbled and value the fact that we can better appreciate the sense of loss and introspection that all of you must have gone through. Praise the Lord for his mercy and grace and his children for their faith, love and support for each other. It is so clear to us how the Lord works amazing miracles each and every day through this sons and daughters.

Wednesday morning was really difficult. Neither Sonia nor I fully felt the full impact of our loss of Rachel until we woke up that day. It was so difficult to stop the spontaneous outbursts of tears and get out of bed but He certainly hasn't led us this far for us to give up on Isaac and for me to be there for Sonia's recovery. We're also increasingly sensitive to falling victim to self pity which is sinful and a disservice to Him and Rachel's memory.

Isaac seems to be doing his best to take advantage of Rachel's sacrifice and courage. His heartbeat is pretty stable and he seems to be breathing well enough with the help of a ventilator. He has a couple of problems already that Sonia tells me is common for premies such as a hole between the heart and lungs, lower than ideal blood pressure and jaundice. The doctors had us sign a whole bunch of waivers and authorizations to start medicating and infusions to help alleviate some of these problems.

The good news is that he is amazingly active. He kicks and waves his arms around like he's dreaming of a non-stop Jackie Chan movie marathon and seems to be cry a lot even though he can't vocalize his cries because of the ventilator tube. The doctors and nurses say this is a good sign. In fact, Isaac is so active that he's giving himself a bit of a rash (skin on skin friction) which is a bit of a concern because the risk of infection is so high (while the pathologist hasn't come back to us with a definite answer, the twins' placentae and umbilical chords were so brittle that the doctors have little doubt that the infection had started progressing in the babies by the time of delivery).

Our neonatologist tried feeding Isaac a tiny amount of glucose two times today to see if Isaac's digestive system was developed enough to start taking his mother's milk. While he wasn't able to digest all of it, our doctor was encouraged enough to try feeding him about 0.5 ml of Sonia's breast milk late this evening. This was a little sooner than we had anticipated but I assume the faster he can take his mothers milk the better. We are so very grateful that he is in stable enough condition for the doctors to try this. Please pray that the feeding is successful.

Our doctor also scanned Isaac's brain and they didn't see any material bleeding thus far. While we are really really early in the game and this can happen at any time, especially if Isaac contracts an infection, we're grateful for the good news nevertheless and will rely on Him to take care of tomorrow and the day after that.

Isaac also seems to respond to our touch. I've tried to give him little baby foot massages and have tried to play with his hands. They are amazingly articulated and they look so different than they did just two days ago. We'd appreciate any do's and don'ts about managing micropremies that you may have. They don't seem to do some of the things that we have read to be commong in the U.S. (such as keeping things dark or dim to best emulate a womb-like environment, etc...) but I'm not sure whether this makes that big a difference. Isaac seemed to try and open his eyes a bit today which I think is bad since it is too early.

Sonia is recovering slowly but surely. Because of the size and location of the babies, they had to cut a lot more than a normal c-section would require. Between that the the probability that an infection had started because of Rachel's pPROM, Sonia is a little behind in regaining her mobility, continence, etc... and has a bit of a temperature. They are trying to get her started back on a liquid diet.

Tomorrow will be the last time we will have a chance to kiss and caress our darling Rachel before we say good bye for now. We have arranged for a small prayer service tomorrow at the hospital before she takes her trip to the mortuary. We have requested to receive her ashes for us to keep and take back to the U.S. someday. Our pastors Dennis and Takeshi will be with us to give a short prayer. While we will likely always have a place in our heart for our angel, Sonia and I believe that Rachel would want us to take heart and inspiration from her sacrifice and to appreciate and cherish our Isaac and be continuously draw nearer to Him so that she can smile down at us from heaven waiting for the time we will be reunited as a family.

Thank you once again for blessing us so much. We are truly humbled.

We will continue to post updates on Isaac and Sonia. If Isaac continues to make progress, we'll also try and post a couple of pictures as well.

God bless,

Jong

Isaac Samuel Lee and Rachel Grace Lee

Isaac Samuel Lee arrived at 9:57AM on April 4, 2006 weighing 641 grams (1.41 lbs).

Rachel Grace Lee arrived at 9:58AM on April 4 , 2006 weighing 467 grams (1.03 lbs) and went to heaven in mommy and daddy's arms at 11:40AM April 4, 2006 to be in the Lord's loving embrace.

Despite physical challenges caused by the lack of amniotic fluid these past five weeks, Rachel Grace was beautiful. She had her grandmother Sung's face and her mommy's long slender legs and delicate hands and feet.

We are profoundly heartbroken but were blessed and fortunate enough to touch her, hold her hands and feet and tell her that we love her. As she went to Jesus, we kissed and nuzzled her.

To our dear precious baby girl, Rachel, we love you more than words can ever express. You are the bravest, sweetest little princess your mommy and daddy have ever set eyes upon. Your suffering these past five weeks have given your brother, Isaac, a chance to stay with mommy and daddy for a while. So many people love you and you know how many people's lives you have touched. I'm sure you can hear their prayers from heaven, sweetie. Our aching hearts miss you so much already but we find comfort in the knowledge that you are so much happier now. We will never forget you, you will always be our darling little Rachel.

Isaac is currently fighting for his life. Being born at 23 weeks gestational age, things are touch and go and so many things can and usually do go wrong so please continue to lift him up in prayer. We will post detailed prayer requests later.

Sonia is recovering at Toho University Hospital. Unfortunately, it is a large public hospital and she is in a cattle room so she can't take or make calls or use her computer yet. She can receive emails to her cell phone (soniachanlee@ezweb.ne.jp). Please continue praying her speedy recovery as well.

As we wish to take Rachel home with us, we will arrange to keep her ashes but will wait until my mother arrives before we move forward. We are trying to plan a short memorial service for rachel when sonia is discharged and can attend.

As the reality of yesterday's events sinks in, our well of tears is full. We are truly grateful that He gave us this extra time with Rachel and that by His grace Sonia's pregnancy lasted long enough to give Isaac a chance. Our love for each other and the Lord has grown immeasurably as a result of this journey.

From the bottom of our hearts, thank you for your love and continued prayers. Sonia and I would also like to thank our Pastors Dennis and Joel and our church's administrator, Shizuka, for coming to the hospital and being there for us yesterday. Please forgive the late posting, I couldn't get myself to write it last night.

God bless you.

Jong

P.S. For those of you not from Hong Kong, April 4 is Children's Day.

Sonia is in Surgery NOW. Please Pray

Hi Everyone,

Our transfer has been pretty much a disaster but I'll post later about that.

This morning, despite our desire otherwise, the doctors at the new hospital basically insisted that they operate this morning. As I type Sonia is in the OR now.

It is 23 weeks today. I'm desperately trying to not be bitter at our first and current hospital and staff so I can focus on Sonia, Rachel and Isaac. As we wrote a couple of times already, it is clear to us that God must really really really really want us to be completely helpless and ignored (by the pigmy medical establishment) right now.

Please pray.

God bless,

Jong

Sonia's back in Emergency Delivery Room; I think we're moving soon

Hi Everyone,

Last night was unfortunately a repeat of the prior evening. Sonia started having contractions again and so we spent another sleepless night in the emergency delivery room.

They now have her on two drugs to stop the contractions but I think they are approaching maximum dosages so we're not sure how much time we have left. Sonia's cervix has dilated more - so much so that apparently if Rachel was in a normal position, she would have already come out.

We also just got the results of today's blood test and things are looking a little grim. It looks like all of this trauma has finally caught up with Sonia and the babies as the tests now show that she either has an infection or (hopefully) an inflammation of her uterus.

Finally, we were told that we will likely be transferring Sonia and the babies to Toho University NICU. I think it is in Setagaya. Has anyone heard of this one? Are they any good at handling very early term babies? Are they aggressive or old fashioned? My experience here suggests that famous sometimes means old fashioned and unwilling to adapt to new technology / procedures so I'm not so concerned about prestige - rather it would be success percentages and how modern their practice is.

At this point, with the test results, it is probably too late to try a delayed interval delivery - so it looks like we're going to try everything possible to keep the babies inside Sonia for a few more days before the doctors perform a C-section to deliver both.

Sonia's father is arriving today and my mom will be here in another day or so. It would be such a great miracle and a blessing if Rachel could wait at least until more of the family could arrive to be with Sonia.

Thanks for this information. Please pray that we can last at least a few more days. If we can just make it to 24 weeks, they can give the babies steriods which will help develop their lungs and give at least Isaac but also hopefully Rachel a significantly better chance at survival.

We did pray for clarity and for doors to be closed and it looks like this has happened. Thank you dear Lord. We again admit how helpless we are and lift our beloved Rachel and Isaac and my precious jewel and loving wife, Sonia up to you, God. We beg You for the courage to accept whatever may happen during these next few days.

Blessings,

Jong

Sonia in contractions again

This is Cindy, Sonia's sister posting for her.

I just received a call from Sonia, she is in contractions again, and back in the delivery room. She doesn't think that the contractions can be stopped this time. She has asked for prayer that the doctors attending to her will listen to God's voice and the right thing will be done. There is a chance to keep Isaac from being born if Rachel can be born naturally and the doctors stop the contractions after Rachel is born. We are not sure what is the best thing for Sonia and the babies, but we know that God knows. So please pray for God's clear voice to be heard by all the doctors, Sonia and Jong, during this time.

Thanks and Blessings,

Cindy

Praying For God's Wisdom

Hi Everyone,

We are really praying for God's wisdom, guidance and peace.

Last night was a comedy of errors but a total blessing from God. Sonia started having what turned out be contractions. Never having been pregnant, Sonia wasn't sure whether they were contractions as it just felt like consistent pressure. Our doctor arrived at around midnight and he said he could feel Rachel's entire arm and a part of her umbilical chord outside of her womb. The umbilical chord was of greatest concern and after trying to push Rachel back in failed the Doctor wanted to start delivery immediately and stopped the magnesium sulfate. One problem, knowing that there was no room at this hospital's NICU, the only started looking for NICU availability elsewhere AFTER they after deciding that they should try delivery and stop the magnesium sulfate.

Two hours later, they told us that there were no NICU beds available in a city of 23 million that is considered one of the most medically advanced countries in the world!

We think God was being merciful. They put Sonia back on the mag sulfate and while it still hurt and contractions still came up. At one point, the contractions were coming every 3 or 4 minutes.

After 8 agonizing hours on a tiny hard delivery table, Sunday morning came and they told us that there was still no luck with NICU beds and that Sonia should now be on strict bedrest, IV antibiotics, IV mag sulfate and bladder catheter until monday when they were hopeful that a couple of beds would open up.

We are thankful for the extra time to make some tough decisions. The doctors still aren't increasing the frequency of their blood and sample collections to make sure infection hasn't set in even though it is and has been the #1 cause of concern for Sonia's health as well as that of the babies.

Furthermore, they are suggesting what we move forward with a C-section to deliver Rachel and Isaac now at 22 weeks 6 days even though this NICU has NEVER had twins this young (prom or no prom) survive let alone avoid severe morbidity. After speaking with a medical group that is very experienced with situations such as Sonia's, these doctors tried to help us understand that because Rachel hasn't had water since week 18, Rachel simply won't make it and that the focus should be in trying to extend Isaacs pregnancy and protect both Isaac and Sonia from infection. They do this in the U.S. now by causing natural delivery of the PROM baby and then chemically stopping contractions again before Isaac starts to go into labor. Apparently, in situations such as this (where the prom baby is delivered before week 24 and the other baby is fine and shows no sign of infection), this procedure buys 31 days extra womb time for the other baby. They have had up to 120+ extra days. They have published 10 years worth of data with ove 50 cases (which they were amazingly kind enough to send me) that show how effective this approach is.

Unfortunately, our doctor doesn't think this is realistic even though the data is so clear.

If it is true that we are not going to be able to save Rachel no matter what if we deliver now, then I'm inclined to try this as I don't want Sonia under the knife unless necessary and NICUs here apparently have a 0% chance of survival of babies born younger than 23 weeks.

This next week plus a couple of days is particularly critical as many things happen after week 24. First, after babies reach week 24, they start to develop receptors that allow steroids to help accelerate lung development (i.e. the steroids won't work at all until week 24). Second, even Japanese NICUs have a small chance of saving babies that reach 24 weeks. Third, if the contractions can be controlled and Sonia continues to avoid infection and Rachel continues to hang in there, I don't see any reason to rush into delivery.

On top of all this, it has been impossible to find out which NICUs in Tokyo are the best. They have consistently been vague on this point. I cannot fully express how frustrating this is.

There is so much we don't know and Japan's system has been incredibly unhelpful. I am also afraid that our insurance company CIGNA / International SOS has not almost equally frustrating. I can't help but visualize every decision and response they are making being directed by cost savings and liability limitation versus what truly is in the best interests of the mother and children. I think part of the problem is that CIGNA / International SOS is relying on their Japan office to be their eyes and ears and they are cut from the same cloth as the other doctors and administrators in Japan that we are dealing with.

At this point, I can say the only One who has been consistent has been God. While I have to admit that I'm not happy right now with our current situation, I am thankful that Sonia and I hold no bitterness towards He who has been so merciful.

That being said, this has to be the fifth or sixth time that Sonia and I prepared ourselves to surrender Rachel and Isaac to the Lord until we see them again in heaven and I'm not sure how much emotional dry powder we have left.

While all of you have been so amazingly supportive and helpful, I would like to ask whether any of you could provide some suggestions or recommendations on which way to turn. A few folks have been kind enough to forward contact information for ob-gyns in the U.S. and we are trying to contact as many of them as we can. In particular, if anyone knows people at a large hospital in Tokyo with tertiary NICU (we've hear that St. Lukes is great for example), we would really appreciate a referral.

I don't want to sacrifice Sonia's health and Sonia isn't sure whether she could make it through naturally delivering Rachel and then possibly delivering Isaac by c-section if the doctors aren't able to stop Isaac's labor. We don't know what the true survival chance would be for Isaac if they delivered by c-section now versus the real and potential complications of trying to stop Isaac's labor after delivering Rachel. If the contractions can be managed and no sign of infection appears, we don't know whether it would still be the right decision to deliver both babies now.

Thanks for all of your tremendous support and prayers.

Jong