April 17, 2006

Dearest Friends,

Today has been a mixed emotion day. Our Silas is showing progress and for the first time we are being given encouraging news not just "he is stable". Albert and I watched and videotaped as our precious blinked open his big beautiful eyes for the second or third time. I am sure he doesn't really see anything much as he is doped up on morphine and another narcotic which erases memory. But the fact that he is opening his eyes is such a NORMAL baby function that it makes my heart soar! In addition, I was able to change his first poopie diaper. Who would have thought after three other children and mountains of dirty diapers that a grin would spread across my face and my heart beat would quicken at the thought of a poopie diaper change!!! Praise God in all things, right?! This is a sign that his guts are working. One more bodily function we've been unsure about.

He has yet to have anything to eat in his tummy and all his nutritional needs are provided in the form of an IV drip the nurses have hooked to his ECMO machine. The nurses have affectionately named this stuff "liquid gold" because the vitamin B makes the color yellow and because it costs about $500.00 per bag. Silas uses about 2-3 per day. The cost of his care is mind numbing. One estimate from a nurse who used to work in billing is that his first 24 hours at Emanuel probably cost $40,000 to $50,000 and that his care costs per day are at least $7,000.................. mind numbing. Praise God we've got great insurance that doesn't cap until $2,000,000.

My thrill at seeing my Silas for the first time since Friday night was made all the more acute when I saw what a difference there was in his swelling. His body had been swollen like a too full water balloon about to burst and now I can see his rib cage! His face, hands, and feet look like a normal chubby baby... well, a normal "Tanaya" chubby baby. Most of the bruising from birth is gone as well, so he no longer looks hispanic.? He does, however, look oriental now with his squinty eyes and yellowish skin from Jaundice. I just can't win! (The jaundice isn't too bad and is going away with photo therapy.)

Another thrill for us today was seeing his chest x-rays. At noon, the lungs showed a general slight clearing where we could make out his heart behind them. Still very cloudy, but before it was just all white and fuzzy. Silas' 6 p.m. x-ray showed even a bit more improvement. The doctors were so encouraged by this that they tried to taper him off the ECMO but his little body isn't quite ready for that yet so they are going to do it ever so slowly over the next few days.

The hard part about today is that our dear neighbors had their surgery for Nanette postponed until Thursday to try and get her vital signs and oxygen saturation up to an optimal stable level. If they can't get her better, ECMO is their option. Please pray this is an unnecessary step and that she would be made strong for surgery. Pray also for Silas' to be made strong for life without ECMO.

Thank you all who have sent encouraging notes to my email and especially thank you to all who are praying with us for the recovery and thriving of both our Silas and Nanette.

With all our love, Albert and Tanaya



April 16, 2006

This is another quick update on Silas. Albert got home this evening with the first really encouraging news we've heard. The chest x-rays showed that Silas' lungs have little spots of air pockets in them. This means his lungs are starting to inflate a bit. Praise God!!!!!!! He also opened his eyes for the first time since birth. What a heart warming moment; of no medical value, this one "normal" thing our baby has done sends our hearts soaring. His eyes are a smoky grey color which probably means they will eventually be hazel or dark brown. Sorry Jerusha, you will be the only blue-eyed Kyne kid!

I would ask everyone to continue to pray for Silas' lungs to open wide and drink deeply of the air around him. I would also ask for prayer for his little blonde roommate, Nanette, who goes in for surgery Monday morning. They will be repairing the hole in her diaphragm and putting her organs back down into her chest cavity. Her family is quite concerned since her vital signs have been not so stable these past two days.

Thank you all for your prayers and your encouraging words. Your emails lift my heart and remind me that I am not alone.

Love, Tanaya



April 14, 2006

I sit here Easter evening having partaken of yet another feast of food provided to us at the Ronald Macdonald house by a continuously changing group of people. I cannot express enough my gratitude to these faceless angels. They come in silently, bless us, then leave. May God return their blessing a hundred fold.

I have not been able to go see Silas for about 48 hours. My mom and I came down with a nasty stomach flu Saturday morning, the day she was supposed to leave for home. We ended up spending the entire day in bed. Today Mom felt well enough to head home and is there now with my three older kids and the rest of the family for an Easter dinner. Albert has spent most of his time at the hospital with Silas (I am so grateful he was spared this flu and at least one of us could be there with our little guy). This has left me with a lot of time on my hands as I can't go to the NICU and expose all the babies to this bug.

Albert tells me that Silas' respiratory therapist says he thinks he hears sounds in Silas' chest. The evening chest x-ray will let us know if his lungs are starting to expand and breathe yet. The head doctor of the NICU unit was on last night and he assured Albert that everything Silas was doing was to be expected at this point of the ECMO treatment. He is stable and his vital signs are good. We won't really know anything else for another day or two or three. When they try to wean him off the ECMO machine is when we'll see if his lungs will function or not.

I have been thinking all day about our mighty God who watched His perfect son tortured and tormented by people full of sin and hate. He watched as we nailed His son to the cross. He actively did nothing as His son gave up His spirit and died for us all, for me. And now I watch as people "torture" my son out of love and a desire to heal him. They pierce his body with so many tubes and wires in a carefully monitored mass of spaghetti. Every single thing these amazing people do is designed to bring life to Silas. And it hurts my heart so terribly to see it all. How infinately much more it must have hurt the Lord God Jehovah's heart to watch His one and only son that Easter almost 2000 years ago. He knows the pain in my heart. He cries with my heart. He can comfort my heart.

It is the one cry of my heart right now for the life of my son. Please pray with me for God's grace to grant me and my family time. Time to get to know this amazing kid God has created. Time to show him the wonders of God's created world. Time to hold Silas in our arms and love him. Just time.

Thank you all who are praying. The comfort we feel is real knowing your prayers are being offered up.

With all our love, Albert and Tanaya



April 13, 2006

Here is an update on our precious gift, Silas:

I must t tell you about this wonderful Ronald McDonald House. I will never look at those golden arches the same after this. We are treated like royalty with all the comforts of home and then some--endless free email! We've made friends with the family whose baby shares Silas's most acute intensive care room and we are praying for their little girl, Nannet who was born with a hole in her diaphragm. Her small intestine is up in her chest cavity. She is doing well on the ventilator and will have her operation on Monday. Please send up a prayer for her and her family. It's kind of strange because Silas and Nannet are the most critical babies in NICU and they are the biggest, both being over 10 pounds. (Silas was 10 pounds 4 ounces)

Silas had a fairly stable day today. He had some tough times but they were all handled by his team of experts. Today Tanaya got to touch him, to help clean him up a little. It was hard not to cry because she longs to hold him so much (and we know he longs to be held). He tolerates the fussing for a couple minutes and then his heart rate increases and his blood pressure goes up. He is terribly bloated with fluid in his tissues so today they started a procedure to take water out of his blood. They say that the fluid problem is getting better but it will be a few days before it is much noticeable.

The respiratory team tried to change his respirator but the tube through his mouth into his lungs is too small for this machine and it allows air to leak out making the machine's alarm sound continuously. So . . . they will wait until another specialist comes along to change the tube. I hope I'm not there for that one!

His lungs are still like little rocks, refusing to do their job. This is a huge concern because He can only be on this machine for seven to ten days due to blood clots developing, and then they have to switch him to a different one with new tubes, etc. It takes hours to prepare the machine, and many people to actually make the switch. The doctor says this always sets the babies back, and Silas doesn't need anymore set backs.

We have made very good friendships with some of his care givers. One girl brought in pictures of her kids to show us today and next week I will try to take her daughter's graduation photos. They are all so kind and many are willing to talk about what is going on and what is happening to our little guy.

I really believe this isn't so much about doctors and nurses doing their jobs as it is about God's supernatural intervention for Silas. Pray for God to soften his lungs and make them work!

In the meantime Albert has gone home to take care of business. He left yesterday afternoon and should be back here any minute. He stopped in at Providence Hospital to put Silas on insurance and was astounded by the generosity of his coworkers. They had taken up a collection to help with incidentals and many had offered their paid days off to Albert so he could take more time to be where he is needed most.

I plan on returning home tomorrow to pick up the children from Ammie's so that they can attend Cowboy Church and spend Easter with family. I'll head back here on Monday-God willing. In the meantime Tanaya and Albert will be without a vehicle but I know God will take very good care of them.

Thank you all so much for your prayers, phone calls and emails. We keep having sinking spells but In between we try to make each other laugh. God is so good to us and we KNOW it and are thanking Him for his blessings. We love you all.

Jeannie and Tanaya