So after I told myself I cannot think about how awful it is that Isaac has to bottle feed on its own - that was the only thing I can think about when I woke up this morning. I ended up writing a letter to Toho today asking if they will let me go in for 2 more feedings over the weekend just so that I can feed Isaac and change his diapers and come back out. They will probably turn down my request but I just felt like I had to at least ask. It just seems so inhumane to me. I watch the baby next to Isaac cry and cry every night because he will inevitably lose his grip on the nipple and won't be able to continue to keep feeding. I watch his SpO2 levels drop to the 60 percentiles for a while (may be more than 10-15 mins) before a nurse would come over and try to fix the bottle for him. And this baby breathes better than Isaac as he doesn't need a nasal cannular when he is not feeding. This is the same baby I have seen licking the side of the bottle because he couldn't get the nipple back in his mouth. I want to cry everytime when I see this. Not only because I know the same thing is happening to Isaac when I am not there, but because I just don't think this should be happening to babies, especially not premature babies and not babies who have parents who could feed them if they are only allowed to visit more than one hour a day!
Dear Lord, I really don't want to get angry or bitter. But I can't seem to be able to stop thinking about this and it is bothering me so much! I need to trust in you more with Isaac's current situation and have more peace but I just don't seem to know how to. So I need your help. I think you need to do it for me. Please help me and teach me how. In Jesus' name. Amen.
In any case, I also wanted to share a video of Isaac when I was leaving today. He started crying afer I put him down to leave so the nurse picked him back up and I was able to get a little bit of video in.
Good night,
Sonia
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7 comments:
Sonia,
I am by NO means up-to-date on Japanese culture or hospital procedures. However, I find myself thinking when I read this blog that if Isaac were in the U.S. and these horrible things were happening to him, lawsuits would abound. Also, if it truly were happening to him in the U.S., you would have a choice of which hospital in which to place him. AND, let's not forget that you would have UNLIMITED time with Isaac in a NICU situation in the U.S.
Is it IMPOSSIBLE to move Isaac, or is it just frowned upon? Could Isaac make a trip to another facility without assistance? In other words, are there ABSOLUTELY no choices? It sounds as though there are no choices at this point, but I just had to ask. Like I said, I have no idea how things are run in Japan.
I will tell you this: IF Isaac is ever well enough to travel, I will offer my house in the Atlanta area to you, Isaac, and Jong so that Isaac could get better care. (That is, if you have no other contacts in the states.)I will even go so far as to help Jong get another job in the Atlanta area in his field. The job market is very good here.
I cannot stand the way that Isaac is being treated, and I just pray that there are options to get him out of Toho as SOON as possible.
Where there is a WILL there is a WAY. The SQUEAKY wheel gets the OIL.
Kristina
Woodstock, GA, USA
It is bothering you so much because that is your mommy instinct, and that nagging feeling that something is so wrong with his situation won't go away, no matter what, until you feel that the situation has changed for the better. I keep checking back here hoping to read something more positive about the GCU over there. Sometimes, you just have to say No, we WILL do this my way or we will go somewhere else. Isaac isn't a micro-preemie anymore and should have an easier time being moved to a more appropriately run facility. You have to do what your instincts are telling you to do now, because just maybe that is God's way of telling you that you need to start the ball rolling yourself. Not that you aren't doing all you can in your current situation, but just to look for different avenues of care for your little chubby cheeked boy. Also, have you called your health insurance coordinator with your concerns? They may be able to help you more than you think. Anyway, just a concerned fellow parent who has followed Isaac for a bit..
Barbie P.
I will keep praying that the situation changes for Isaac, and you get to spend more time with him or he can be moved.
Also, I don't know your family at all... but I had the most wonderful dream that you moved in across the street from me (in New York.) You were with Isaac and he was happy and healthy and beautiful, and when we met him you told us about his special angel sister Rachel. I know you will never move to New York and be our neighbors, but I found this dream a nice vision of what is to come for you, Jong, and Isaac -- a happy and blessed homecoming as a family.
Dear Lord, I pray that you will give Sonia and Jong favour as they deal with this hospital. I pray for wisdom to know how to approach the doctors and nurses, and Lord Jesus, I pray that the situation will change for Isaac and all the babies in this hospital. Father, I know Your heart is crying over the neglect and ignorance in the care these babies receive, and You desire for all of them to be cared for properly. But most of all, I pray for healing for Isaac!!! Lord, if the doctors hearts are hardened by Sonia's pleas, then I ask that you will move mightily in this situation, and have Isaac moved to a facility that will allow Sonia longer visits, Kangaroo Care and will treat little Isaac with dignity. And Lord, continue to strenthen Sonia and let her feel you holding her and Isaac in your loving arms.
In Jesus name.
Love ya, Sonia
I think at this point I would do everything in my power to move my son to a different hospital. As previous person said this may indeed be God telling you it's time to move him..No way would God want him to endure any neglect of care or for him to be denied the love and care from his own family. I truly urge you to look into moving your son to a better hospital as soon as possible..Blessings
Praying that Isaac can get the proper care he needs - from his own mother. He NEEDS his mother! Please Lord, let Isaac's mommy be around him more and be able to care for him, hold him, and just be able to LOVE him and not have to worry that her 1 hour is up. A baby needs love from his mommy, not a bottle propped up by his mouth at lunch time.
I spoke with Sonia today, and I just wanted to highlight some things regarding Japanese culture. I've lived in Asia a while, and I even teach on adapting to Asian cultures, so I hope that I can give some insight.....
Sonia and Jong are doing their best in a bad situation. They have asked about other hospitals, and they've actually found that most places have similar policies and procedures. The only difference is that a few other hospitals may have longer visiting hours. Her choices are very limited.
It can be hard for us to fully understand the constant pressure and tension that Sonia is under. She is in a different culture, a very difficult culture, where there are very strict social orders, and status and authority is very important. Japanese culture says, "Obey those in authority (meaning doctors), don't question, just do what you are told. Fall in line." Her own culture says "Question everything, and fight tooth and nail for your rights!!! Don't accept the word of one person." (as is the case with most of the readers of her blog, including myself).
Also, if Sonia does FIGHT for her rights and the rights of her baby, it could actually be worse for her and Isaac. They may become passive agressive and give Isaac even less care than he's getting. She might successfully get him transferred (against the doctors will), but at the new hospital she will have a reputation as a trouble maker, because she questioned and challenged too vigorously. And that will mean they will get poor care. I had a friend who asked too many questions, pushed too hard, challenged too much, and the doctors pretty much just decided to let her child die. In the end, they were able to take him to Germany. (it wasn't Japan, and her child had a life threatening accident, not a premmie, but there are similarities).
I know that many of you are trying to encourage Sonia and Jong through this difficult time, but Sonia does really feel pressured on all sides to do the right thing. And I think she may even feel a little judged that she hasn't demanded her 'rights' at this hospital.
So, please pray for Sonia and Jong. Pray that they will have wisdom to deal with the doctors, nurses, and hospital administration. Pray for healing. And pray for this family to be able to effect change for other families. I believe that God puts us in difficult situations sometimes so that we can bless others. They really are walking a fine line culturally. And that line involves the life of their son. So, pray for God's will to be done and His Kingdom to come in ToHo and in Japan.
In Christs Love,
Anne
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