May 17, 2006

The famous NICU phrase "three steps forward, two steps back" has struck again. Silas has figured out how to maneuver the bottle so that he doesn't have to swallow. His calorie need is about three and a quarter ounces every three hours. Yesterday he was taking as much as two and a half ounces orally (the rest dripped into his NG tube). Today we haven't been able to get him to take even an ounce. The nurses have told us that when we go home they would either teach us how to insert the NG tube for when it gets pulled out or figure a way we can take Silas in to someone to have it done. One more medical issue to juggle once we are home. As it stands now, time seems to be an insatiable vampire bat sucking the very life essence out of every moment. Before we notice, another minute is gone. . . Another hour is gone. . . Another day. . . Another week. . . And now months. Silas' schedule goes in three hour increments. We usually spend an hour with Silas trying to nurse, then giving him his bottle, changing his diaper, taking his temperature and chatting with him or his myriad doctors and nurses about his condition. After spending this hour with Silas, taking five minutes to walk back to Ronald McDonald House, 45 minutes to express milk, clean up, label and store it, and counting the five minutes to walk back, we are left with one hour to either eat, sleep, shower, return phone calls, pay bills, or email update.

I am feeling incredibly tired and discouraged. One would think I'd be used to this up and down thing by now, but I'm not. I seem to have such a faith in God for the "big" things and not so much in the little things of life. I never once questioned God about Silas' life or his possible brain damage. I trusted completely that Jehovah would do what He willed and then He'd help me deal with the outcome, whatever it was. Now, in this comparatively small issue of whether Silas will get his nutrients from breast, bottle or NG tube, I question His sovereignty and feel my most helpless. I try to remember that God is still in control of even the tiniest problems we face, but it sometimes feels like He has bigger things to do now. The hauntingly exquisite lyrics of an old hymn come to mind:

What a friend we have in Jesus,
all our sins and griefs to bear!
What a privilege to carry
everything to God in prayer!
O what peace we often forfeit,
O what needless pain we bear,
all because we do not carry
everything to God in prayer.

Have we trials and temptations?
Is there trouble anywhere?
We should never be discouraged;
take it to the Lord in prayer.
Can we find a friend so faithful
who will all our sorrows share?
Jesus knows our every weakness;
take it to the Lord in prayer.

Are we weak and heavy laden,
cumbered with a load of care?
Precious Savior, still our refuge;
take it to the Lord in prayer.
Do thy friends despise, forsake thee?
Take it to the Lord in prayer!
In his arms he'll take and shield thee;
thou wilt find a solace there.

My mom told me that I need to be specific in my prayer request, so here they are:

1.) Please pray that my faith would be strong and unwavering in my precious savior. And that I would be constantly reminded that the one true God is watching and caring, without ceasing, for myself and my entire family.
2.) Please pray that Silas' oral aversion would disappear and that he would not only take his feedings, but he would enjoy them as well.
3.) Please pray also for our other three children who are displaying some rather disturbing behaviors which we feel at a loss to deal with. Pray God will be their parent when we cannot and that His peace, which goes way beyond our understanding, will engulf their precious souls.

Thank you for all your patience while I spill the contents of my heart onto the computer. Thank you also for all the prayers and support we have received from so many of you. It means so much to know that friends and family care so deeply about our troubles. We are touched by the love you express to us in so many ways.

Love, in His son's name, - Tanaya