February 3, 2007 The present and the past.

As a paranoid mother of a NICU survivor, I took Silas to the Pediatrician yesterday. Since this is our first big respiratory "thing" and he seemed to be gurgling in his chest, I didn't want to take any chances. It was so strange to see him sick, coughing, struggling to breathe and yet have his oxygen sats at 96% and to be told that his lungs sound clear; it is all in his head. It felt surreal. I can scarcely believe that he is just a normal little boy, no different than any of my other children. Thank-you, Lord, for your grace in our lives. And thank-you for bringing us through the most difficult time of our lives. And thank-you that 2006 is OVER! I don't think I can handle any more sadness or fear for awhile. Thank-you for knowing more than I and accomplishing Your will in my life no matter how I feel.

Back to Silas: his weight has dropped a bit since this sickness. He is down to 16lbs 11os. I'm not sure what this will mean in the grand scheme of things, but it greatly concerns my mom to hear of it. She always says, "He's so tiny," whenever she holds him.

He also has a hard time sleeping and nursing due to the head cold, so night times have been yet another adventure. You'd be surprised how well I can function on a couple hours sleep per night. I go about my daily chores with a smile on my face and asking, "What may I do for you now, my child?"------*N*OT*!* In fact, last night at 1:30am, I went back to our bedroom and in tears started listing all things that were overwhelming me to my bleary-eyed husband. He took the next shift and after 30 more minutes of fits, Silas finally fell asleep, exhausted. After my little outburst, I fell asleep on a chair in the living room and now my back aches something awful. All in all, our little bear is aptly named. . .He is the son of a mommy bear!

It seems petty to complain about these things after what we've been through and after reading about all the things other NICU families are still going through or [shudder] the alternative which other families have had to face. I swing from self-pity to guilt and back again. Maybe when I get a little more sleep I'll be able to think it through clearly, but right now I just feel awful no matter how I look at things.

I never did write about our trip to Portland for Silas' surgery. Every time I sat to write, I'd end up losing what I'd written or I was interrupted, and then I got the call from Becky about Joshua passing and I was too overcome with grief. Since I am back to writing again, I'll add some of what I was in the process of writing back then about our trip. I am doing this more for posterity and so that I can keep everything journaled for Silas when he is older more than anything else.

November 27, 2006:

The trip to Portland was long and tedious. Normally it should take five to five and a half hours to get from our house to Portland, but it took Silas and me eleven and a half hours. The rain was so intense that at one point, vehicle's on the freeway were at a stand still as traffic tried to maneuver through water which covered the tires on my van. However, Silas' surgery went well. Dr. Lashley said that it was a less complicated surgery than he had expected and it was completed without a hitch. Unfortunately, after the anesthesia wore off, Silas was pretty miserable for quite awhile. The doctor had anticipated a fairly quick recovery (one to two days), but Silas was on pain meds for about two weeks, the poor little guy. At any rate, he is doing well now and none the worse for the wear.

We were absolutely thrilled to get to visit with a bunch of our old NICU friends as well as some of the nurses and staff at Legacy Emanuel. It was a truly bizarre feeling to not know any patient in the NICU. It felt like I was forgetting someone, like I was missing a family member. I was grateful to learn that a little preemie girl from the NICU was finally discharged home early to her proud parents and six older brothers after a ten week stay. I teared up when I learned that another NICU babe, a preemie twin who has celebrated his first birthday, was readmitted upstairs to the pediatric intensive care unit for yet another surgery. He had celebrated his six month birthday in the NICU while we were there.

So many stories. So much pain. So much hope. So much sadness. So much love. It is a horrible, wonderful, terrifying place. A place where new little people are given a chance to say hello to their families and live their lives while others say farewell to those who love them most. The epitome of contradictions existing in a vortex unknown and unfelt by most who do something as natural as giving birth. And yet it has existed for longer than I've been alive. It is amazing to me that before I took my first breath as a babe, people have been in training to save the lives of infants. Meanwhile, families have throughout time faced the unimaginable horror of their new baby's possible death. I feel so naive. And yet I also feel so grateful to have had the privilege to get to know a handful of these wonderful families and their precious children.

Some families who've lost their children have expressed fear and anger that their children are being forgotten when others stop mentioning their child's name and try avoiding the subject. I must confess that I too am at a loss as to how to offer condolences and comfort without ripping open the wounds. It is difficult . . . No, it is impossible, I think, to do or say "the right thing". How do you tell someone that their loss still affects you when the anguish they themselves suffer cannot be comprehended? How do you tell a stranger or even a dear friend, that you remember their child often when their remembrance never ceases? How do you express your sorrow and regret at what could have been when their sorrow is so deep it penetrates every aspect of their lives? To offer my empathy seems to mock their pain. To say nothing seems to trivialize it. I guess all I can say is that I remember and will *always* remember the precious little ones who've touched my life and changed me in ways I still don't comprehend. Their lives mattered. They were and *ARE* important. And they have made ripples in life that, by the grace of God, will become waves of change that only time will reveal.

One child who still defis all the odds and faces the hardships of his life with a smile and good cheer, is Joshua. Never have I met a more laid back, happy baby as this little man. Between ER visits, hospital stays, and the daily ritual of painful vomiting every fifteen minutes or so from his severe acid reflux, I think I'd be ready to throw a temper tantrum or two! But this little trooper just smiles when its over as though to say, "Yeah, but I'm alive and my mommy loves me." Becky (mommy) is so exhausted. She is the sole care giver for Joshua. There is no one near who can (and is trained) to help with Joshua's care. All the agencies that help have said, "He isn't sick enough to warrant a nurse caring for him for a couple hours a week." One woman at an agency had the nerve to write a letter informing Becky that maybe she'd win the lottery and then she could afford to hire someone to provide care. The descriptive adjectives that come to my mind for that woman. . . ! In the meantime, Joshua is not taking any more pre-digested formula than when he left the NICU. His liver and spleen are so enlarged from the TPN (liquid nutrients given intravenously through his central line) that they bulge out from under his rib cage and, in all likelihood, he will need a liver transplant in the not too distant future. Joshua has not reached his $2,000,000.00 lifetime benefits yet (and yes we are all surprised!) but the co-pays for his innumerable doctor visits, ER visits and medications are so far beyond what anyone could afford that Becky has gotten on the Oregon Health Plan and they are covering some of the difference. Please keep this family in your prayers as they continue to struggle financially, physically and emotionally every day. They are both so precious to me and it rips my heart out that I am not able to be there to help them.I took Nanette (and her mom, JoAnn) with me to visit Becky and Joshua. It was amazing to see all three miracle babies sitting together on a couch in a living room. It truly felt like hallowed ground. The kids seemed to know that they shared a bond and we moms couldn't tear our eyes off of them. I just marveled that all three were sitting there together on the couch.DJ, a preemie born a little over a week before Silas weighing 3lbs 11oz (I think that's right Trina?!) came to visit us at the Ronald McDonald house as well. As you can see, He is no longer tiny. The boys had a fun time saying hello while Trina and I chatted.I was sad that we didn't get to see Aunna and her parents, Dustin and Amanda, but Trina says they are doing well.

*End of November 27, 2006 post*

Thanks to everyone who continues to pray for our little/big family. It is very much apreciated.

Love,
~Tanaya~