May 23, 2006

From Jeannie:

Well, here I am back at the Ronald McDonald House. I was leaving for Canada on Wednesday morning and at the last minute Chuck made a phone call and found out that the folks that were meeting him on the following Saturday weren't even sure they could make it, so the whole meeting thing was moved to the following Saturday. What we didn't know was that our Red Rock family specifically prayed the night before that Chuck would be able to take me to my reunion. Thank you so much dear family! We bundled the kids into the Suburban and left Micah in Portland with his parents. But not before running up to give Silas a hug. Would you believe it? Chuck snuggled him into his arms and the little guy started smiling and smiling. His smiles progressed into grins before Papa handed him to me, at which time he promptly dropped off to sleep. Doesn't it seem like that is always the way of it?

Canada was fantastic. We were there for only two full days but all of my siblings joined us (seven all together) and many nephews and nieces bringing the next generation with them. Our Canadian church family welcomed us with open arms. Everyone wanted news of Silas and eagerly looked at the photos of his grinning little face. We are all amazed at how much he looks like my brother Larry. Even Larry's wife exclaimed over the resemblance. When Larry got his hands on the photo, after examining it for a moment, he said, "Why, he's gorgeous!"

The party was a huge success. My brother, Les, whose anniversary we were celebrating, roasted a whole buffalo calf in a homemade oven in the ground. His wife, Sharon, and my sister, Sharon, whose birthday we were celebrating as well, organized a feast to rival Queen Esther's. The weather cooperated and we ended our day with a breathtaking Canadian sunset and songs around a bonfire. What a treasure my family is. And such good sports; always up for a family gathering at a moment's notice. I even had a brother fly from Texas and a sister drive from Vancouver Island.

We made it back to Portland in a remarkable 23 hours. Needless to say Chuck and I are exhausted. But the little girls were nearly perfect the whole trip and they had the time of their lives. Chuck has since arrived at home with another migraine headache, poor guy.

Now we are dealing with our latest disappointment. Silas won't be coming home as planned. Poor little bum can't seem to take in enough milk unless his mommy is coaxing and encouraging every single feeding. Tanaya has slept at Ronald McDonald house instead of Silas' hospital bedside for the past two nights--she is so very tired--and he has dropped weight each night. Before they replace the feeding tube, Tanaya has requested they do a trial and fortify her milk before it is given to him. The last time they did this he vomited incessantly. Please pray with us that this time he will tolerate the added formula.

God bless you and thank you for praying.

Love, Jeannie


From Tanaya:

Silas is still doing well today, even though we are not able to go home yet. He lost some weight two days in a row and that means he hasn't been taking in enough milk. The new doctor whose been on since Monday, told me this morning that we could take him home today with an NG tube. When I asked why we couldn't try fortifying the breast milk, he replied that that would be fine. He had assumed from our conversation on Monday that I wanted to go home AT ANY COST! Now, I may be really excited to go home and long for it with every fiber of my being, but definitely not at any cost. I let him know that I wanted to stay here (and would do it gladly) for as long as it took to get my child healthy. While medically it would be no problem to deal with the NG tube, I'd much rather get Silas stable without the silly tube before we go home.

We have had another baby go on ECMO today. The last little guy was only on for four days and seems to be doing well now. This time it is a little girl. It is strange that, before Silas, the most recent ECMO baby was on the machine in October, six months earlier. Now, this is the third child on ECMO in six weeks. It seems to go in waves I guess. Again I was able to show Silas to this family and how well he is doing post-ECMO. It was a little easier this time than last to see the baby on ECMO. I was more prepared to see the team of nurses and doctors and all the equipment surrounding the prone little figure on the bed. What I wasn't as prepared for was the emotion of the mommy. I saw in her face all the fear, pain, anguish and helplessness I had felt. I wanted to enfold her in my arms and weep in grief both for her and for myself and for everything we'd lost. Even though my little bear is doing remarkably well and I know that he will live a life here on earth with myself and the rest of my family for a good while, there is still so much to grieve.

I grieve the loss of bonding time with my child after birth. I grieve for his birth itself and how it is a scary memory not one of pure joy. I grieve for the loss of contact with his siblings. I grieve that he lost those few precious hours after birth to bond with me. I grieve that his daddy didn't get to talk to him and rock him and comfort him throughout his first night after being born. I grieve that he will have ongoing medical issues that he will deal with for a long time to come. I grieve that he has other peoples' blood flowing through his veins. I grieve that he has had so many holes poked in him that if he were made of plastic he'd be a sieve. I grieve that, at a month and a half old, he has yet to feel a breeze on his face or the sun warm his back. I grieve that I have yet to hold his naked little body next to mine while we crawl in the tub. I grieve that he is not in my arms nursing but instead is getting sustenance through the bottle. I grieve that our dog Juno will never snuffle Silas and bark at him when he tries to pull on Juno's face. I grieve that my older three children have not been able to attend their various clubs and ceremonies that go along with them. I just grieve for it all. I don't think nearly all of it has really sunken in yet. Maybe after I'm home and I can sit and read all we've written I'll perhaps then be able to sort some of it out in my mind.

In the midst of my realizing how much I, and we as a family, have lost, I hold my son. My living, breathing son. . . Alive. . . Breathing. . . Amazing! Each of my children are miracles from the Lord. But until Silas came along, I didn't realize how miraculous they are. For the Creator to design such intricate organs such as lungs to breathe and hearts to circulate blood, is simply, in a word, awe-inspiring. He took Silas to death's door and brought him back again. My older three haven't taken such a perilous journey, and I've taken it for granted. The next time any of you look at your children, grandchildren, nieces or nephews, take a moment to watch their chest. Each breath is taken only because the Living God has ordained that it be so. Each beat of that remarkable heart happens only because He holds it in His hand. If He were to get distracted for a nanosecond, they would simply cease to exist. Every time you look at a child today, remember the miracle it takes to keep them alive THIS day. This hour. This very second.

I have watched kids in the NICU for the past six weeks. I have talked with parents of older kids who are in the pediatric wing of Emanuel. Each has a story of tragedy tangled with elation. Each has a greater appreciation for the mundane stuff of life. The little steps-- breathing with CPAP or a nasal canula instead of on the ventilator, the first poopie diaper, the first swallow of water-- are such miracles when you haven't been certain the child would ever be able to accomplish them. Remember that the miracles here only SEEM more miraculous than the ones happening around us in our ordinary, everyday lives. Stop and look at them. Thank Him for them. Thank God for each and every breath.

God bless the many, many people who are lifting Silas up in prayer. Thank-you. Tanaya