As promised, I actually had quite a bit more to say and this was the part that tripped me up last night when I was so sleepy. Just a warning, this is going to be one of our longer posts.
Jong was having a few rather tough days up till last night. In fact, he was having such a tough day the day before yesterday that for a while I was more worried about him than Isaac. Also, as I mentioned in my post the day before yesterday, I was starting to feel impatient with Isaac’s progress since we seemed kind of stalled. On top of that, one thing I have been working on is trying to find a good hospital that we can potentially move Isaac to when he is more stable. I will get into more details about this later but after talking to people, our first choice would be Red Cross Hospital in Hiroo, so with the help of someone to help me translate, we called Red Cross’ NICU in the hopes of setting up an appointment to talk to one of the neonatologists just to discuss about the possibility of moving Isaac there later. However, I was very disappointed as the nurse we spoke to said they won't meet with family members directly and we have to go through our current doctor who has to recommend us to them. We weren't ready to talk to our current doctor about this potential move yet for various reasons and I just wanted to find out more about Red Cross and lay some groundwork before we talk to our current doctor. But we are again confronted with our usual frustration of living in Japan – red tape. So I was pretty bummed out when we were driving to the hospital because I had let myself get a bit excited imagining Isaac at Red Cross which would allow me to spend a lot more time with him. I started feeling very helpless as I couldn't effectively advocate for Isaac's interests because of the language difficulties. I actually felt that it was almost like social services came and took our son forcibly away as we are only allowed to see him for an hour each day and we seem to have no control over his welfare.
So on our way to the hospital, Jong and I were talking and I was thinking about why God has given us such a difficult situation – it sometimes almost seems harder that we are mourning one child while having another child so fragile and struggling so hard in NICU. It then hit me really hard that God has given us this very difficult trial because He loves us so very much. He loves us so much that even though it hurts Him more than any of us to see us suffering, He still makes sure that we are go through these trials so that we can truly be changed in our hearts to become better children of His, so that we can experience the true joy of having an intimate relationship with Him and so that we can have the peace that passes all understanding by walking so closely with Him. This part really hit me because it is so difficult for me to watch Isaac struggling with all the tubes and the IV. In addition, every time we see him, we see extra needle holes and bruises from the hospital’s attempts to draw blood for testing and to change his IV. It breaks my heart to see our precious tiny teeny baby having to suffer but I know all these things are necessary for Isaac to continue to remain stable and heal. How much more painful it is for our Father in Heaven to watch us suffer while He shows us how to share in His joy and peace.
It is becoming more and more clear to me that God has really great plans for Isaac. And God is molding Jong and I to be Christ-centered parents so that we can make sure that Isaac grows up learning to love his God with all of his heart, his soul, his mind and his strength. God is teaching us to be strong for Isaac as Isaac will not learn this if we let him take the easy way out each time he encounters difficulties in his life. We will have to suck it up and watch him work through problems and trials while leaning on God.
I also want to say a few words about God’s plans for Rachel. It is clear to us that Rachel’s work on this earth was to give Isaac a chance to live. But I also realized that I have learned so much from our little girl. Her selflessness and sacrifice have humbled me so much. I grew up pretty self-centered and instinctively, I always worried about my own comfort first. It shames me that I was so whiny and complained so much about my physical discomfort during my 5 weeks of bedrest while she was so brave and strong and suffered so silently – she was basically shrink-wrapped by her sac without water those 5 weeks; she was not able to move and on top of that, Isaac was on top of her creating more weight and pressure on her whenever I had to get up to use the bathroom, shower or for my daily check-ups. I recently rewatched a short video clip of Rachel shortly after Jong was allowed into NICU to see her after she was born. You should see how hard she was trying to breathe. Her lungs were so tiny as they were not able to grow during the 5 weeks when she had no water to breathe in. But she fought and fought. Why, when I know she knew that Jesus was waiting in heaven to receive her into His arms? Where there would be no pain or suffering for her? I have to believe that she fought so hard because she knew her mother needed to see her alive, even if it was just for a little while.
Of course, as usual, after Jong and I started losing faith and despairing, God again blessed us with a great visit with Isaac last night. When will we learn to have more faith? When will our hearts finally understand that we just do not need to worry or fret when we should know God is always on our side and that He has and will always be there for us?
I also wanted to explain a little about why I want to move Isaac into Red Cross Hospital in Hiroo. I learned late last week that Red Cross Hospital has the biggest NICU in Tokyo (which also means it is the biggest NICU in Japan) and that it is one of if not the best NICU in this country. It is also only a 15 minutes drive away from both work and home for me. It has much more flexible visiting hours with no limitation to the number of hours one can visit as long as its within their specified hours (which goes till 9 pm). The most important reason why I want to move Isaac there is from everything I have read and almost every preemie mom has told me that studies have proved that it is better for Isaac’s short term recovery and long term health for Jong and I to spend as much time as possible with him. This will be even more important when we are allowed to hold him and do kangaroo care (holding him skin-to-skin on our chest). Studies have shown that at least 3 hours a day of kangaroo care can help preemies significantly improve their breathing and preemies who get kangaroo care go home sooner. Kangaroo care can also improve other things like, for example, his digestion. In addition, I think it is very important for him to be in a hospital near to where we live because after he is discharged, I want to be able to go to a hospital that knows his medical history very quickly and easily when there is an medical emergency – which will almost be an inevitability after he comes out to the outside world from the sterile NICU environment. Also, Red Cross is located in a pretty international area so my guess is the English ability of the doctors and nurses at Red Cross will probably be better than at Toho. We are really grateful to all the doctors and nurses at Toho who have taken such good care of Isaac during his most critical time and it actually pains me that I might be moving Isaac away as I know a lot of the nurses at Toho have grown to love Isaac. But I spend 3 hours a day going to see Isaac but only see him for about an hour out of those 3 hours. If he is at Red Cross, I would be able to see him for 2.5 hours for the same 3 hours I spend. Also, unfortunately, Toho’s visitation policy is just antiquated, even in Japan. I have called 4 different highly reputable NICUs in Tokyo and no one has a 1 hour per day limit on visitation anymore. We have talked to the Toho staff about their visitation policy quite a few times earlier on and unfortunately, whoever is the decision maker for Toho's NICU will not change the policy even though the nurses and our doctor do not agree with the 1 hour max.
In any case, we are not planning to move Isaac until his is more stable but I really want to be able to get our foot in as NICUs are often full in Tokyo and I want us to be on the waiting list if there is such a thing so that when he is ready to be moved, we don't have to wait for another few weeks or months. If any of you have good contacts with Red Cross Hospital at Hiroo and is willing to introduce us to your contacts, please email me at rachelandisaac@gmail.com. Also, I would appreciate your prayers for God to open doors for us to get Isaac into Red Cross if it is in His Will. Thank you very much.
Sorry this is getting so long, but I want to leave you with a song that Jong played for me last night as we were remembering Rachel. Here is a link to a page that actually plays the song - http://users.1st.net/teddi/index25.htm. I adjusted the lyrics a bit for Rachel and have marked the words I changed in square brackets.
Go Rest High On That Mountain – By Vince Gill
I know your life
On earth was troubled
And only you could know the pain
You weren’t afraid to face the devil
You were no stranger to the rain
Chorus:
Go rest high on that mountain
[Girl], you work on earth is done
Go to heaven a shoutin
Love for the Father and Son
Oh, how we cried the day you left us
We gathered round your [ashes] to grieve
I wish I could see the angels faces
When they hear your sweet voice sing
God bless all of you,
Sonia
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3 comments:
I don't know of any good NICU in Australia let alone Japan, but I will pray for God to open all the right doors and hearts.
Evelyn Peel
PS. Could you post a photo of yourself & Jong. It sounds silly but it helps me to keep you all in mind if I can see you.
Dear Sonia
So good to read what you have to share; it's as though you are talking to an old friend as you account all that's going through your mind. Amen to all that you said about how God has impressed upon you both that this is all about how much He loves you -- to allow you to journey through these arduous days, weeks and months to come. PTL.
I was also reminded once again about what you shared on the Turner's blog site -- the extract from the letter that you received from the lady at Hannah's Prayer. How you are forever changed bc of this experience. Forever changed for good and brought closer to our magnificent Father. Your/Our chief and highest end being to glorify God and fully to enjoy him forever.
For some reason I pulled out the Westminster Standards just now and looked up in _The Confession of Faith_, Chapter XVII: Of the Perseverence of the Saints, II: "This perseverence of the saints depends not upon their own free will, but upon the immutability of the decree of election, flowing from the free and unchangeable love of God the Father; upon the efficacy of the merit and intercession of Jesus Christ, the abiding of the Spirt, and of the seed of God within them, and the nature of the covenant of grace: from all which ariseth also the certainty and infallibility thereof.
Also in Chapter X: Of Effectual Calling, III. "Elect infants, dying in infancy , are regenerated, and saved by Christ, throught the Spirit, who worketh when, and where, and how he pleaseth: so also are all other elect persons who are uncapable of being outwardly called by the ministry of the Word."
The way you have described Rachel reminded me of the above.
We will pray with you regarding a possible hospital move and all that has to happen for that to come to pass! For continued joy and abiding patience, and for cutie Isaac, of course.
OXAndrea
Sonia,
Praying you get that NICU move - I know how important it is to spend more than one hour with your son. Someone once told me that preemie's feel like they belong to the hospital. Someone else gets to choose when to bathe them, when to feed them, what to dress them in.... Mommy doesn't get to make parental choices until baby is home. That alone feels like a loss. I actually wrote a full notebook of instructions for the nurses and asked that every nurse read it (yes I really did:) and part of my instructions were that mommy would launder clothes, I would bathe, I wanted to be part of daily care conversations and discussions, etc. We have so much more freedom with this in the USA. It probably still drove them a bit crazy but I was happier:). When Ty came home from the hospital though he was MY baby. When Ty was readmitted a couple of times later, I was at his bed 24/7 and couldn't imagine leaving him. One PICU Dr. even negotiated with me so that I would leave for 3 hours for Tanner's 3rd birthday party. Once you GET to be a full time mommy you do NOT give the priveledge up:)!
As for the song, I love that song to and it moves me everytime I hear it. Obviously you and I are both country girls at heart:)
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