May 27, 2006

We are going home!!!!!!!!!!!!!!!

Just a quick note to let everyone know that last night I slept in my Ronald McDonald House bed WITH our little bear! This morning, our dear friend, Karen, is driving us home. Praise His name! I will do an update tomorrow with pictures of all the little people I've been asking you to pray for.

Love, Tanaya

May 25, 2006

We think Silas is finally going home tomorrow. He isn't actually released yet but we are as sure as we can be-which isn't that sure, of course. :) Doctor Newman is back. She had Silas when he was on ECMO and we love her. She thinks, like we do, that the eating thing will work itself out when the nurses don't have to micro manage every drop he ingests. It seems to be a timing thing with him. He needs longer periods of sleep before he wakes up hungry. Doctor Newman enjoyed seeing Silas' face without tubes for the first time. She agreed with us that he is pretty cute, and a real bruiser.

Please pray for Tanaya. She is going on four hours sleep each night and not getting any naps during the day. I will have her family come stay with me until Silas finds a routine. Please pray for the other children, too, as they are still exhibiting behavior problems due to the absence of their parents for so long. Pray for us to have wisdom in helping them cope.

Tanaya will have to be very careful not to expose Silas anywhere for the next three months, the doctors say. No church, nobody's home, stores, or basically nowhere. Nobody can go near him with sniffles. (Please pray for the other kids to be healthy for a long time!) This will be hard because we want to expose him to all his wonderful prayer partners. But be patient. We'll give him a welcome home party when we can.

Silas will need to come back to Portland occasionally, and he has several new doctors in Medford that we have yet to meet. He will be a busy guy, for being under house arrest. Please continue to pray for him and his complete recovery.

Thank you and God bless you for praying.

Love, Jeannie

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

Big brother, Micah, finally gets to hold his little brother. And yes, Silas has more hair than Micah does!


















Mommy holds Little Bear for a wonderful photo op. As you can tell from the picture, make-up has not been high on the priority list!


















There is nothing like snuggling into daddy's neck. . . Right before you throw up all over him! Isn't it grand to be so normal and isn't it bizzare that we think it is a wonderful thing when we get thrown up on?










We are soooo done with the photo shoot, Mom. I need my beauty sleep!


Please take careful note. . . Not one tube invading Silas' precious body. Praise You, the Living God! Praise You, the Risen Savior! Praise Your Holy Name!

May 21, 2006

Doesn't Silas look great in his Gammy's arms? The picture from before where he is smiling is in his Papa's arms and, as usual, my children always do their first smile for their Papa.

This morning I am pleased to report that Silas has not once had his meals gavaged in 24 hours. That is, he has eaten all his meals not had them squished into his tummy through the NG tube. Yeah! However, this has taken quite a toll on me. I am completely exhausted. I am stumbling when I walk and slurring my words like a drunkard. I am so relieved that Albert will be back around noon. He will take over the Silas vigil and I'll get some much needed sleep. It is hard to leave our little bear because, as knowledgeable and nice as the nurses are, they are not his advocate. They do not have the time to spend hours holding him trying to coax him to eat. They will try for a bit, then gavage the rest of the milk. It takes too much time away from the other babies. Anyway, he is doing well and I look forward to crawling into my own bed with Silas curled next to me awaking when HE is hungry, not when the hospital schedule says he should eat. He is gaining weight every day and that is what is so important. He is now almost 10 pounds 8 ounces. He has passed his birth weight!

Love to all, Tanaya

May 19, 2006

Today, a nurse who's never worked with us before was on for day shift. When I was telling her about Silas' feedings and how we have such a hard time waking him up to eat, she suggested that he was needing longer sleep times due to his age. We talked to Dr. Shelderlin who said he was game to try "on demand" feedings with the condition that he had to be awakened to eat if he went for longer than four hours. The nurse reminded me that it could take up to 48 hours to see if this was going to work or not. He still needs to take in his allotment of calories and gain weight, so if this does not happen, we will have to go back to the every three hours schedule.

Anyway, Silas took a longer nap today and woke up crying. When we gave him the bottle, he took nearly his whole feed. Then he was alert and awake for an additional half hour studying my face and looking around. At every other feeding, he has fallen asleep during the feeding. There has been very little social time. Then at the next feeding, he woke up MAD! He wanted to eat and was wondering why it hadn't started yet! Needless to say, he finished his whole feeding. He woke up again only two hours later and ate another whole feeding. The nurse said that if he keeps this up for 24 hours, they'll remove the nasty (but so far necessary) NG tube from his little button nose. Wouldn't that be wonderful! The Lord is gracious and merciful in all things.

By the way, if I'd have known how well everyone has been praying, I might just have asked that you pray I win the lottery! I don't play it, so that itself could be the miracle! (JUST KIDDING!)

He has also been burping properly (without the accompanying vomit) since we switched to the new schedule. He threw up once (all over my shirt) after the first feeding was half way done. He then proceeded to finish eating. After his second meal on demand, I felt warm wetness creep across my lap. I thought that the NG tube had come unplugged and was leaking on me. This has happened a few times already, so even though I'm not technically nursing my baby, I still always have the smell of milk on me. But it wasn't the NG tube. Silas had peed so much, and so fast that it was pouring out of his diaper and soaking my pants. Thank-you little boy. I was wondering when I'd get baptized by him. His diaper wasn't even that wet! It just poured out the side. Between his clothes and my clothes, I do a lot of laundry around at the Ronald McDonald House.

Right now, we are looking at a discharge date of Tuesday, May 23. That will be exactly six weeks from when Silas was mercy flighted up here to Legacy. We don't yet know if "going home" will mean home to our house or home to the Rouge Valley Medical Center NICU. He is having a couple more tests and some consultations on Sunday and Monday to make a determination about that. We still have many things that will require continuing care once we go home. Silas's blood pressure will need to be monitored closely, at least once a week, probably twice. It is difficult to find someone who has the ability and knowledge to take a proper blood pressure on an infant. Dr. Jenkins does a clinic once a month in Medford, so we won't have to go all the way to Portland for his monthly check up.

Silas will also have continuing physical therapy which the wonderful doctors from Northwest Newborn Physicians (read "doctors in charge of all NICUs in the area") are helping us setup. The physical therapists here are pleased with Silas' improvements. Even though he has a ways to go to develop his muscle tone again, I can see a difference already. I have a bunch of exercises they've given me to do with him and he doesn't seem to mind them too terribly much.

Becky's Joshua is still not doing well. He won't quit throwing up and they can't figure out why. He is being sustained through the nutrients given in the IV. He is not eating anything and yet every time she moves him he vomits. She is amazingly strong and good natured through all of this, but I know it is breaking her heart into a million pieces. Please pray for Joshua's miraculous healing to shock everyone around him. He is a beautiful big boy and his smile is so precious. Becky said tonight what awesome little people they all are to still smile after all they've been through. I think the same about her.

Aunna is remarkable. She was moved off the ventilator and onto CPAP. Then off CPAP and onto a pressure nasal cannula (minor CPAP). Her mommy gets to hold her now. WOW! And she is looking less like a wrinkled old woman and more like a baby. When I see her, it is like getting a glimpse inside the womb. We are watching her form. She is "fearfully and wonderfully made" by the mighty hand of God. To see the chubby tissues forming under her skin and her little body grow is unbelievable. She had a shunt placed in her skull as well, to drain the fluids building up. I've seen this in other preemies around the NICU. It doesn't stop them from doing well. I actually commented, "Wow. She is getting long!" Imagine saying that about a baby who is thirteen and a half inches. But you have to keep in mind she was only eleven and a half at birth. She is doing so well and pleasantly surprising her doctors I'm sure. She IS a survivor!

Nanette is home and looks wonderfully content. Check her out at www.nanettecooke.blogspot.com and also remember that I post pictures at my website for Silas. That address again is www.silaskyne.blogspot.com.

I really must get some sleep now, so I'll say goodnight to the computer and thank-you to all who read these words and pray for the little people enduring so much just for the chance to live. May God bless you in ways you can't even imagine. May His son, Jesus, fill your hearts with His peace, love and forgiveness. May He make His name known to you and His precious blood cover you. - Tanaya

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

May 16, 2006

Dear Friends,

For those of you who are accustomed to daily updates, I apologize. I am struggling to get enough sleep now that Silas is starting to nurse. It is very difficult to have a nursing baby whom you don't live with. When I start to get stressed about the situation though, God always shows me how it could be more difficult. For instance, with one of our neighbors, his mom lives 25 minutes away. They have been here for 8 weeks now (going home next week!) and she commutes everyday, getting to the NICU between 9am and noon and leaving around 10pm or so. Another family has 6 boys ages 13 down to 2. Their first little girl was born at 26 weeks gestation and is here at Emanuel. They live an hour away with no family near them who can help out. This means that Dad has to work during the week and Mom also has to be home during the week to take care of the other children. They can only come up on the weekends. I can't even imagine the strain those parents are under and the heartache they must have. I am reminded that in all things I must be grateful. Yes, our family is going through a rougher time than most families do with the birth of a child, but there are others who have it much rougher. Yes, Silas' life hung in the balance and he now faces issues that most other babies will never have to face, but he is alive and has a great prognosis. This is more than others in the NICU can claim. Praise God in everything. I thank Him for the troubles we are having with Silas' eating. It offers one more opportunity for God to show His great and powerful miracles. Whether Silas has these issues for the rest of his life or not, God will use them to bring glory to Himself.

I am feeling lonely for the Cookes tonight. Their blonde beauty, Nanette, was wheeled out of the NICU in a car seat today for her journey home. Just knowing that they are not down the hall makes me tearful. I am at the same time overjoyed that their family can finally regain some normality. Before they left, Joe gave Albert a book he authored. (Perfect timing since Albert had just finished his last book that morning.) Albert is half way through and has proclaimed Joe a good author. I can't wait to be at home and nursing my little bear because that is when I get lot's of reading done. And by then it will be my turn for Joe's book. By the way, it is a kind of sci-fi fiction book. Just up Albert's and my alley!

So many more babies have gone home recently that it feels like the NICU is empty. With two admits being flown in tonight and two more anticipated from labor and delivery, it is not likely to stay deserted for too long.

Cayden, the baby from White City, is doing well. As soon as he learns to eat, he'll be able to go home. There are the same issue,s at this point, for Silas as for Cayden.

Becky's Joshua is off the ventilator now, so they are weaning him off the morphine again. He is such a trooper. I am praying every day that God would make Joshua's recovery full and complete in such a way that people would never guess that he had had any kind of trouble as an infant. I am also praying for strength and endurance for Becky. She is an amazing girl and I just want to help her in some way. I feel torn about leaving, now that Dr. Baxter told us we would probably be going home sometime next week. I don't want to leave Becky (and all the other friends we've made) to keep facing the trials their little munchkins are going through.

Silas' recovery is coming along famously. He has started taking the bottle and seems to be able to swallow about half his feeding before he says, "No more." He has a high blood pressure issue that is responding well to the medication and the nephrologist is pretty sure it will be resolved by the time he is six months old. WE will need to find a place around home that can check his blood pressure once a week. Silas is now searching my face with his eyes and staring at mine. It makes my heart leap almost out of my chest with pleasure. He has a slight heart murmur they've examined through an echocardiogram. It was probably caused by some scar tissue from the ECMO canulas. They were a little concerned it could be a build up of yeast colonies, but so far the blood cultures have been negative and he shows no sign of illness.

I talked with Dr. Baxter about how Silas sleeps through the night (and his night time feedings) which has been a concern for me. After a long stare at Silas, she said, "Well, we could try to wean him from this behavior if you really wanted us to. It is up to you." Yeah. Funny woman. I finally get given a child who wants to sleep through the night, and I might want them to "wean him" from this behavior?!?! So, while I have to try to wake him up to feed him and get his required amount of calories in his tummy, she makes jokes. (By the way, I adore this doctor. Come to think of it, there isn't one doctor who has worked with Silas who hasn't been wonderful.)

The results of Silas' MRI were in today. The overall brain looks exactly as it should at this stage of recovery. The MRI showed a small millimeter sized lesion on his cerebral cortex, probably caused by a slight hemorrhage. The area between the hemispheres is an equal and appropriate space. What dose all this mean? There is no sign of prolonged oxygen deprivation or brain damage. Wow. Not only is the Lord giving Silas back to us from the grave, but he has also seen fit to make him. . . What's the word I'm looking for? Whole? Complete? No, I know other kids who have issues such as Silas potentially faced. They are both whole AND complete. I guess the description is that God just made him like our other children. . . Nothing more, nothing less than the perfect person to do the work the Lord has laid before his feet. Praise His holy name!

Love to all, Tanaya

Here are some pictures of our little guy.

May 13, 2006

Quick update from Jeannie:

Please pray that Tanaya doesn’t get discouraged because Silas won’t eat. Her milk supply has diminished by more than half, probably because she is so tired and not drinking enough. She spends all nights at the hospital with Silas. Silas sleeps on his tummy/her chest when she is in an easy chair. For the past three nights she has had a wonderful nurse that leaves them alone as much as possible and she has gotten a little sleep. She goes back to the Ronald McDonald House for short periods during the day. She is exhausted but she wants to be at each of his feedings to try to get him to nurse.

Tanaya says that Silas grins when he is sleeping and looks so cute. He sleeps a lot and when he is awake he looks around but he won’t meet her eyes. For some reason he avoids that particular stimulation. He is having an MRI on Monday to determine if there is any brain damage. On the bright side, Silas got a present with a card from Nanette today. It said, "for Silas from your girlfriend down the hall, Nanette" and it was a stuffed monkey. Too cute.

I’m going to take the three older children up to Portland to see their parents on Wednesday—God willing. Pray that they (and me) are all over their colds before they see their parents. On Thursday I will leave Jerusha with Albert at Ronald McDonald House and take Micah and Savannah with me up to Peace River, Canada, to celebrate a 25th wedding anniversary (my brother and sister-in-law) and a 65th birthday/retirement (my sister). Chuck is feeling really bad that he can’t go, but he has ranch commitments. Please pray for travel mercies and a good time with family. I’m hoping that this will be a wonderful, positive adventure for the kids. They have been having a tough time.

Nanette is doing so well she is on demand feedings instead of scheduled feedings, and she is actually nursing for some of the feedings. Tanaya says to check out her website because Joe wrote some cute stuff. I think it is www.nanettecooke.blogspot.com . If that doesn’t work then go to the Nanette link on Silas’ site: www.silaskyne.blogspot.com .

Amanda got to hold Aunna for the first time today. Tanaya says Amanda was sooooooooooooo excited! Aunna is older than Silas (that is, she was born before he was, but she is about 3 months younger gestationally) and still so very tiny.

Joshua, Becky’s son, has an enlarged liver and his body is retaining fluid. Also, his tummy is rock hard, meaning his guts aren’t working at all. He is on the high frequency ventilator and he is just laying there limp. Joshua and Becky have been at Emmanuel Hospital in the NICU since January 28th. Now they aren’t even thinking of sending Joshua home. They are just trying to make him live and get back to the way he was before the surgery.

May 12, 2006

Dear Friends,

We have had a yet another day pass and once again it was a great day for some and a hard day for others. Silas, Nanette and Aunna are doing wonderfully. However, Becky's Joshua is not doing so well. I haven't had a chance to talk directly with Becky since Joshua's surgery to place a permanent feeding tube into his abdomen happened this afternoon. All I know is that something did not go well and Joshua is still on the ventilator. He had undergone this surgery in anticipation of going home in the next couple weeks and now that looks like it is off the table. In spite of this, the Creator God can do miracles and I am praying Joshua will be a testament to His awesome power.

Aunna has been transferred from the high frequency ventilator and is on a regular vent now. The doctors are talking about getting her off that and onto a CPAP machine possibly by next week. Dustin and Amanda got to give her her first sponge bath ever (they've been here for five and a half weeks). Praise His Name!!!!

Nanette has moved and is our neighbor again. . . sort of. Somehow, she got a private room with glass doors and a window to the outside. This is luxury in our section of the NICU with cramped little booths and curtains that don't quite fit all the way around. When I asked how Nanette rated so high, Joanne smiled and replied simply, "She's a princess." Well, what can you say to that? She's right of course. And Nanette is taking about half her food orally now so the whispered word is that she might see the inside of her own home by the end of next week! By the grace of the Most High, let it be so.

Albert and I were called today from the ladybug section by our dear nurse friend, Kathy. She asked if we'd be willing to come talk to a family about ECMO as their 2 day old son had just been put on the machine. I am still having a hard time sorting out the emotions that have been coursing through me like a raging river. To see another child on the ECMO circuit brings a flood of memories and fears and desperation back to a still raw surface and it has also created a slew of new emotions as well. On the one hand, we got to show the dad, Tim, our Silas. We were able to offer him tangible hope and assurance that kids on ECMO make it off and they look and act normally. On the other hand, I felt both dread and horror that another child and his family were going to go through this rollercoaster while feeling great relief that it wasn't us. The sea of conflicting feelings washing over me was nearly unbearable and by the time we left they overwhelmed me as I broke down. I'd imagine that this is something like survivors guilt. I don't understand it yet and maybe I never will. I will trust that the Lord knows what is going on in my heart and that He will use it for His glory. I trust that He knew that all this would happen since before the dawn of time. Even though He has all knowledge and knew from the moment he chose to create Silas in my womb that we'd go through theses trials, I trust that He weeps with us when we weep and that He rejoices when we rejoice. I trust that He knows best even when I falter and wonder if He really knows what He is doing. I trust.

Love, Tanaya

May 10, 2006

Silas is doing well health wise. He is still getting his nourishment from a tube into his stomach through his nose. Tanaya’s milk is being dripped in over a period of two hours and he has the third hour to get a little hungry. There is still no sign of any lingering infection. The 28th was the last blood culture that grew colonies. As long as he doesn’t get morphine he doesn’t have to deal with more drug withdrawals. PTL! His vomiting has decreased quite a bit, especially since they stopped lacing his milk with formula. They had added the formula because they wanted him to get more calories than Tanaya’s milk provided.

Silas will need a lot of physical therapy to get his atrophied muscles to function normally. He lay for three weeks in the same position and now his muscles won’t work right. Yesterday Tanaya was taught how to wrap him and hold him—she is never allowed to carry him on her hip. The therapist will start working on his little body today.

Getting him to nurse is the biggest hurdle right now. After babies get through ECMO, parents get excited because the baby will latch onto a passy and they think that nursing will be the next step. Not so. There are added steps to nursing that these babies find it difficult to conquer. Tanaya is finding that out with Silas. He will latch on to suck (with a shield) but he doesn’t like getting anything (meaning the milk) in his mouth, so when the milk pours in he lets go and makes faces. He will only suck about 12 to 15 times at one feeding. He spits the milk out and looks at his mommy with a look that says, “My passy is leaking!” Here is something big to pray about. Tanaya has been warned by nurses and the hospital’s lactating consultants that insurance companies won’t pay to have babies stay in the hospital just because they won’t eat. They make the doctors put a permanent feeding tube into their bellies and send them home. Please pray that this doesn’t happen to our little Silas.

Silas is never more content than when sleeping in Tanaya’s arms. Twice she has gone away and left him during feeding times at the encouragement of the nurses. They have promised to call her if he is fussy before they give him morphine. Both times they didn’t call and they gave him morphine. One time Tanaya just went into a different room to pump, not out of the hospital, and the stuff was administered for the second time in one night. Now Silas has gone for three days without morphine because Tanaya has been there to console him and settle him down. That means he has gone for three days without any withdrawal symptoms. He just wants his mommy. He has definite fussy times but Tanaya has been trying to figure them out and he always settles down for her.

Tanaya is extremely exhausted. She has an infant that she needs to nurse and she doesn’t live with him. Last night she was able to spend the whole night in the nursing room with him, but his nurse popped in every hour or less. She finds when she does go back to Ronald McDonald House there is only time to do one thing besides pump. She can eat, have a shower, wash a load clothes, or have a nap and that is all.

Nanette is almost up to full feeds through the NG tube (nasal gastric-I think) and in the next day or two they will try to pull the IV lines which are in her jugular like Silas’ were. Her parents are getting to hold her, Joe for the first time ever. Every other time she was hold-able he was back home. They will hopefully get to feed her Mommy’s milk in bottles soon. Her infection seems to be gone and the antibiotics are almost done. They still haven’t figured out what caused that last infection.

Aunna is stable. She has gained ten ounces in one week (almost a third of her weight). She is still the tiniest baby in the NICU.

Becky’s Joshua is getting the tube into his tummy by the end of the week. She will have to take him home with it. She is giving Tanaya all his too small clothes that he was never able to wear. Also all of his pull-over the head shirts because the broviac IV won’t permit him to wear them. Becky has the most wonderful attitude and sweetest demeaner, Tanaya says.

Sorry for the delay in this email. Tanaya has been overwhelmed and exhausted and so have I! Today I rushed Jerusha into Immediate Care in White City so that I could pay $230.00 for them to tease a tic that had planted itself in her neck. I didn’t know how to get the silly thing out, and I didn’t know if it was the lime disease kind of little monster. All the doctor did was tickle the tic’s backside until she (it was a female tic of all things) popped her head out. Jerusha insisted on taking “Cinderelly,” (her favorite Disney movie and, consequently, her name for her little friend) home in a bottle. She had a meltdown in the car when I told her we should to kill it. Obviously the two had bonded so I left its bottle/house on the dash when we went into Wal Mart for an hour (it was an A/C Max day today). Now she is hoping that it isn’t really dead, just sleeping, and it will be there to greet her in the morning. Aren’t Grandmothers cruel?

I have to tell you a little story about Jerusha and her unique, four-year-old sense of humor. I was vacuuming our room at Ronald McDonald House and I kept on vacuuming as I moved out into the hallway because it obviously needed it. Down the hallway I went and on into the foyer/reception area. I was on a roll. Jerusha just happened to walk in from the play yard through the hallway to our room. She glanced up and saw me and without saying anything she smiled and started singing, “Cinderelly, Cinderelly, they always keep her hoppin’!”

Lisa is feeling much better. She’s invited us for supper on Sunday, but Shahala is in lots of pain with her broken/dislocated tailbone. The kids and I spent Monday with her. (I continually get into trouble for not getting the kids to bed on time. It was 9:30 before we even got home!) As she gingerly takes little steps it pops repeatedly. She is bored but not in pain when she’s lying down. Please pray for her healing.

God bless all of you faithful prayer warriors. We love you!

Jeannie

May 7, 2006 pm

Silas is phenomenal. His oxygen saturations have been so good that the monitors kept going off to tell the nurses to turn down his oxygen. Imagine, he is breathing normal room air and that happens! They finally got tired of running over to hit the silence button that they removed the sensor altogether. The day shift nurse talked with the doctor and made a bunch of awesome things happen for me while I was at church this morning. First, He can be unattached from ALL monitors when he is in my arms. Second, he is getting a "big boy" crib in the next day or two as soon as one becomes available. Third, I am allowed to start trying to nurse him and have him get some food directly from me. And finally, Albert and I got to spend an entire uninterrupted hour in the family room with our son. The family rooms are tiny rooms with two built-in couch-like beds, a small bathroom, a chair and a breast pump or two (what WOULD one need with more than one breast pump?!?) Anyway, Silas was a little groggy so he spent most of the time snuggled up next to me sleeping. And I get to do this every four hours. It is strange to do things with Silas that are so normal. But it is also soooooooo wonderful. God grants us His grace to endure that which we think we cannot endure and then he grants us his grace to appreciate with exquisite agony, the sweetest simplicities we have never appreciated in the past.

Silas now weighs 9 lbs 15 oz which is up from 9 lbs 9 oz. He poops regularly without the painful assistance of suppositories. He is still throwing up a bit, but it is more like urping now and has no yellow mucus junk in it. It is just sour milk. I've been holding him so much that I smell a bit like him when I leave. Maybe it's time for another shower. . . ? Oh, who has the time! I'm busy with my little bear.

Nanette seems to be doing well. I saw her in her mommy's arms today (YEAH!) and she is tolerating her feedings again. Just tiny amounts, but it is another step in the right direction. Aunna is still stable and her parents seem a little more relaxed today. I sure hope they are getting enough sleep. I say this as I write my update at 1:30 in the morning.

I am so glad Albert is back and he can relieve me for while. Our bear is in his daddy's arms and I can get a good 5 hour stretch of sleep in a real bed. Speaking of which, I hear it calling my name as I type. Thank you all for your prayers and support and your wonderful emails. Those of you whom I have never met as well as dear tried and true friends have been a true support in all of this chaos. God has anchored us in Him through Jesus' blood and smoothes the waters with the friendships of so many people. I am truly sorry I have not had the opportunity to respond in person to all of the emails. Rest assured that I am keeping every one of my correspondences and intend on answering them at some point. If anyone would like to check out our website I have posted every update on it. It starts with the most recent update and as you scroll down they go back to the first update we wrote. The address is:

www.sliaskyne.blogspot.com

Again thank you for all your prayers and support. We are truly blessed and appreciate it tremendously.

Poem called: From Silas

[Here is a poem I wrote after church this morning.]

I am enfolded in His strong embrace,
Held close to His chest through perfect love.
I am tenderly nurtured with amazing grace
By the ministering of His holy dove.

He wipes my tears with his gentle hand.
He plants certain hope deep in my soul.
On His firm foundation I take my stand.
Infused with His strength, I'll reach my goal.

He sends His angels 'round my bed at night.
They bring me comfort. I am never alone.
Their shining glory so beautiful, so bright,
Brings me His comfort when I utter a moan.

Who is this One you venture to ask?
He is the Father, the creator of all.
He is the Spirit fullfilling His task.
He is my Jesus who loves one so small.

--- Tanaya Kyne ---

May 6, 2006

Just a quick note to tell the world that I BATHED MY SON TODAY!!!!!!!!!!!!!!!!!!!! For the first time since he was born, he got a real bath. Thank you Nan (his day shift nurse today). And his hair is such a rich chocolate brown. He even has some golden highlights. He loved the bath and the snuggling with his naked little body up against Mommy's skin. Today is a GREAT day!

May 5, 2006

We are having a great/terrible day today. Silas is doing fabulously. We keep being reminded by those in charge that he is still a sick little boy, but we just want to leap for joy at his progress. However, our dear Nanette is once again having difficulties. Joe told me tonight that she has some sort of infection. They are running tests. I'm not sure if it is due to her bowels or if it is something else. I haven't seen Joanne all day and my heart is breaking for them both.

The range of emotions is unexplainable to people who haven't been through the NICU roller coaster and it is unfathomable to us that are going through it. How can we be so excited about our child's progress one moment and yet in tears the next over our friend's child? And vice versa when ours has a day where he is taking giant steps backward and their child is doing well. It is like our lives have become so intimately entwined that we ache and rejoice in every aspect of Nanette's recovery. I yearn for the day that we are sitting together watching our youngsters play in the sandbox or on the play ground and reminice about how hard it was getting through the trauma of the NICU. Some day soon we'll be able to sit back and marvel at the normalcy of our lives and how our children are leading such normal (if somewhat spoiled) lives. Today however, we weep with the Cookes. We hope with the Cookes. And we wait with the Cookes.

My sister, Shahala, and her husband Peter have gone back home after a lovely, if all too short, visit. Since Silas has been doing well, their visit was a wonderful distraction and reminder of life in the outside. They took Albert home with them so that he could get our car and come back. After talking to the older three kids though, I think that he seriously needs to spend Saturday with our big kids. Savannah is missing us tremendously having only seen me for a few days in almost 4 weeks. Jerusha asks me every time I talk to her how many more sleeps until I come home. Tonight she asked if I was ever coming home. Micah has gotten very sullen and quiet and I am very worried about him. I just don't know what to do about all of this. The parable of the shepherd leaving the 99 sheep who were safe to go find the one lost sheep comes to mind. But it doesn't alleviate the weight on my heart and mind about Micah, Savannah and Jerusha. I know that I am where I need to be right now and there is no choice in all of this, but I still feel as though I am being incredibly neglectful of them.

So, about Silas: this morning when I arrived at Silas' bed, he had no IV and no oxygen canulas. He has only the nasal tube which administers my milk into his tummy. He is almost a free boy! Well, that might be pushing it just a little, but we are having an "up" day so why not revel in it's glory. Silas is starting to be more interested in nursing and it is amazing to have his soft skin pressed to mine. I spent three hours this evening with him snuggled up against my skin while he slept (they call this kangarooing). I say he slept, but he wasn't the only one. I woke up only because I needed to express my milk and it was acutely torturous to let go of him. The wonderful nurse on tonight promised she'd call me if he got fussy and since I trust her to be true to her word, I've come back to the Ronald McDonald house to finish my update and get some more sleep. It is difficult to be not living with my infant son. I would never leave such a young baby, even with a sitter like Grammy or Aunty, for lengths of time such as I am compelled to do here. We are so close to the hospital (we can see it out the window) yet it is not nearly close enough. It is hard to not get impatient when I look at Silas as he looks and acts like such a normal newborn. I want to scoop him up and run away home. I was reminded though of how long a process this recovery will be when I talked with the physical Therapist who will be starting to work with him on Monday. They need to make sure that he doesn't let his muscles and joints atrophy because they are sore from lying in one position for so long after birth.

I can't wait until I my older children are able to come visit and hold their little brother for the first time. He will blink his dark eyes at them and get his first introduction to the faces that go with the voices he has heard since his ears were fearfully and wonderfully created in the womb. And I will be able to see my family together. Others have told about getting day passes or weekend passes for their little ones when they were getting well. They got to spend a whole weekend at the Ronald McDonald house as a family. Oh the sheer joy at the mere thought of such a prospect! Soon and very soon.

Love and thanks, Tanaya

May 4, 2006

Dear Friends,

Last night Silas, Albert and I had a long night. It was his first night off the morphine and withdrawal kick-started the evening. He also hadn't had a bowl movement in quite some time so the nurse gave him a suppository. This led to cramping, which led to vomiting, which led to misery for us all. I called Albert at midnight and Silas had been sleeping for half an hour. I convinced Albert to come home and get some sleep. After Albert had a bite to eat, we called to check on Silas. The nurse told us he was very cranky. So back we went. I was still not allowed to hold him so I asked if I could please talk to the doctor on duty and perhaps she would give me permission. Long story short, I held him most of the night. Even in Mommy's arms he didn't sleep more than 5 to 10 minutes at a time before he'd scrunch up and start to cry again. Albert slept a little in one of the reclining chairs and I finally sent him back to our room for some decent sleep (maybe two hours). At change of shift, when they kick us out while they give report, I had to leave my still fussing baby with a nurse, a stranger. Albert got up and went back to be with Little Bear an hour later when we could go back in. I got about 3 1/2 hours sleep and then got a wake-up call from my husband. He and Silas had been sleeping semi-comfortably in the recliner. : ) I did a load of laundry and cleaned up the room (after expressing milk once again) to get ready for Pete and Shahala's arrival this evening. When I got back to the room from picking up laundry, a message was waiting for me. Albert told me that if I expressed my milk first, the nurse would let me try nursing our son. I can not even begin to tell you how excited I was. I called Mom and left a message telling her and hustled as fast as I could. When I got there, the IV in his neck had been removed as well as the nasal oxygen canula. I could see Silas' face. All of it. And I could pick him up just because I wanted to. Wow. Wow, wow, wow.

Silas did try to nurse a little. It is a start. He wants to and turns to find me when I touch his sweet face, but he won't really close his mouth. Probably remembering all those nasty things he has had in his mouth and throat. I'll work on it a little more tonight. I am heading back over to the hospital after coming to the Ronald Mcdonald house to write this update and make sure Pete and Shahala got settled in. Please pray for me to have patience with some of these nurses. I know they mean well and that they really know their medical stuff. But this is MY child whom I have observed since birth and known since conception. When I hold him, he is calmer than when he is lying in the bed even when he doesn't completely conk out. This seems to make sense to me as a mother of four but not to a few of the nurses who just want him left still.

Anyway, we are having great strides forward and are going to keep our eyes focused on that.

Love to all, Tanaya



May 3, 2006

Greetings all you other world-ers!

At least that's how it kind of feels! I am so excited that my sister and her husband are coming to visit us Thursday through Friday and a friend who is scheduled to deliver her baby with a hole in his diaphragm at Legacy Emanuel on June 28, might come over on Friday. The nurse on last night asked if I was feeling too overwhelmed with the prospect of so much company. I just responded with, "I don't DO alone well." I occasionally joke that if I ever got locked in solitary I wouldn't last a week. Albert says that I wouldn't even need solitary; if I got locked in our house without a phone I'd die. Sooooo ......... if you are in the Portland area we'd love to see you. Come and swing through our world for a visit and bring us news from the rest of the world!

Silas is doing okay today. He had his eye exam and the eye specialist told me his lungs are working. Yes, the EYE specialist told me his LUNGS are working. Well, I'd make my lungs work too if someone was trying to hold me still and pry my eyes open! He is still vomiting, but not nearly as much, nor as violently. He is completely off the morphine (something I understood would take weeks to wean off of. . . Wait a minute, it has been weeks!) Anyway, the last dose of the IV medicine he has been taking for his E-Coli pneumonia was administered this evening at 5:00pm. He will be switched to the oral form of medication for the blood yeast infection. They have added powdered formula to my milk to boost the calorie content and are saying that he could survive on what he is ingesting if he can keep it down. They also gave Silas Prilosec (a medication for acid reflux) to see if maybe this will help the vomiting. All of this together means that they are talking about taking Silas' jugular IV PIC line out tomorrow. This is both scary and very exciting. It is so terribly hard getting a line in this little boy that it is a daunting thought to have to start another one. My mom will have a churning stomach until they can say more definitively that he won't need another IV PIC line. I, on the other hand, am ecstatic and only thinking about the prospect of holding my son any time I want to.

I got a preview today of what this will be like. Albert's sister came by for a brief visit and we stepped out of the NICU to say goodbye. When we came back in, about 15 minutes later, the nurse was holding my screaming, squirming baby. He really can let out a bellow now! What a wonderful joy to hear and see my son throw an absolute tantrum after all this time of drugged up lethargy. She said he'd thrown up a bit and started to throw this fit. So she was trying to comfort him and it wasn't working. She said to me, "Well, I just don't smell right. Here Mom, if he has got to be held anyway, he might as well be held by you." When I asked about the doctor's order to not hold him, she replied that they sure weren't going to let him just lie there and scream, and besides, the order was given a couple days ago. There was nothing on his charts about not doing it today.

Now, I must add that this is the same nurse who was so unkind and condescending to me one day. She had treated me as though I was incompetent and in the way. Today, however, she was just fine. My analysis of the change?. . . Dr. Jekyll came out when her time of month went to Hyde. Bad joke, I know, but how else can one explain the change?

Little Nanette is still doing fine. She will hopefully start on mommy's milk again before the end of the week. Joanne (Mom), is feeling well, but her mom, Josie, looks tired and worried. Something about being a grandma seems to drain these ladies quicker than the moms and dads. Joe (Daddy) will be here again this weekend. I pray this visit will be much more peaceful.

My friend, Becky, Joshua's mom, who has been here since his birth January 28, is alone. Last week, not only did she find out that her son would have to be on a feeding tube directly into his tummy (not through his nose) for the next 6-12 months, but Joshua's dad told her he no longer wanted to be a part of her life. It is so hard to see people going through so much life and death stuff with their children and then have regular world stuff added on top of it. Joshua, born with the same kind of hole in his diaphragm as Nanette, only has two thirds of his bowels left after multiple surgeries. His bowels kept dying and having to be removed. He will also need to have a broviac IV line (the one we do not want Silas to get) inserted to administer additional nutrients before he goes home. He is her only child.

Aunna is doing. . . well, stable. It is a dreaded but hopeful word around this place. It means that the situation hasn't gotten worse (YEAH!) but it also means the situation hasn't gotten better (BOOO!). Anyway, Daddy (Dustin) was let off work last night and got some sleep. He is now headed back to work tonight. Amanda is here without family for a few days so the rest of us will try to keep her spirits up.

Thank you all again so much for all of your prayers and concern. Please feel free to send my emails on to others. I'd just ask that you keep them intact without editing. I want to share this experience with other people (my way of dealing with stress) and have them pray for us and Silas. Everything I write in these updates will be posted to a blog site which is almost up and running. If someone missed some updates from the beginning they will be welcome to visit the site and catch up. Tomorrow I am going to try to figure out how to upload pictures to the blog site as well. I can't wait to show his precious face to all of you. The site will be:

www.silaskyne.blogspot.com

Again, remember it won't be up and running until May 4th or 5th.

Love, Albert and Tanaya

P.S. We received the itemized bill from the hospital that we requested and added it up. Excluding the care he had already received in the Rouge Valley, the ambulance rides, the ambulance flight to Portland, the flight Respiratory Therapist's's and flight nurses' bills, and all the NICU doctors' bills; excluding all of these, the bill for his first 24 hour stay at Legacy Emanuel Hospital only came to a whopping $47,000. The total bill for his hospital stay so far is around $267,000. The business office estimated that with all Silas' other bills, insurance is looking at paying around $500,000 so far. We talk to Insurance tomorrow to find out about how much of that we will be responsible for. We have good insurance so, comparatively speaking, it won't be much. However, to us it will be a chunk of change. Thank-you to everyone who has been so kind to us and given in so many ways to our family. We are truly unconcerned with our bills at the moment as God has made it abundantly clear that He is taking care of us. Thank you for being His hands reaching out to us. And may God shower you with blessings for your kindnesses.




May 2, 2006

From Jeannie:

I'm going to tell the bad news first so we can end on the good. Silas had another bad day today. His vomiting progressively got worse and his stool runnier as the day unfolded. They did an ultrasound on his abdomen which I thought was quite distended this morning, and Tanaya says is more so now. I talked to the infectious disease doctor who said that the ultrasound showed a normal liver with healthy blood vessels leading to and from, however that works. But his spleen is enlarged. There were a couple explanations for this but the only one I remember is that there could be a virus. This makes lots of sense because of the vomiting and another low grade fever. They have stopped giving him feeds of breast milk every three hours and instead have a steady stream going non stop through a tube that is threaded though his nose now. He is still getting the same amount but stretched out continuously. The vomiting is violent and contorts his little body and he cries-another good thing because it is the first time we have really heard is voice because of the trauma to his voice box from the intubations. The vomit (filled with mucus) is projected all over everything and even onto the floor, causing him to need to be cleaned up many times over. When I talked to the doctor she was thinking the mucus could be coming from the lungs and the "spitting up" she called it, could be part of the pneumonia. She seemed to think that despite the vomiting he is digesting some-that's a good thing and they can tell this by backing up on the feeding tube to look at the residual in his stomach-but they still are under pressure to increase the amount because of the IV line that needs to come out. Much of his nourishment comes from that IV line. He was uncomfortable this morning and early afternoon before I left and Tanaya says that by this evening he is obviously sick, like with some kind of a bug maybe.

Another sad thing is that the lab is still finding colonies of yeast growing in his blood as of April 28. That means that the antibiotics aren't doing the trick, or haven't yet. I watched his neonatal doctor's face fall when she heard this. She told me later that they could continue to administer that particular antibiotic orally if he didn't vomit it up-a last resort if the IV line into his neck fails. (That precious line again!) The lungs still had a bit of cloud to them yesterday when we looked at the x-rays but we were told that at this stage the x-rays aren't conclusive and are only necessary every few days-for some reason (I can't remember why).

We didn't feel comfortable with the new nurse that was looking after him. This morning I would tell her something about Silas and she'd ignore me or blow me off, like when he didn't have little socks on his hands and his fingers were tangling in his tubes and lines. She said to me, "Don't worry, he'll be fine." I was uncomfortable that she wouldn't listen when we told her something. We have been with Silas almost constantly and we know how he usually is and when he exhibits different behavior for him. When Tanaya got there she found some socks and put them on his little hands. I'd been standing there holding them so he wouldn't do any damage. I worked hard on getting her to like us and I made Tanaya give her a complement about something she did for Silas, too.

Whenever there is a surgery in the NICU they ask all parents/visitors to leave because they do most of the operations right there. Tanaya ended up not being with Silas for three hours this afternoon because of a surgery. Well, when Tanaya got back after being out of the NICU for so long she found Silas without a nurse nearby, crying, vomit on him (scary because of the IV line into his neck), and liquid poop in his diaper and on the bedding. She cleaned him up but was so upset she started sobbing on the phone tonight. I know that they were terribly busy, especially with the surgery, and that it probably wasn't the end of the world, but imagine her mother's heart when she saw him in that state. Now she is scared to leave him with any nurse she doesn't know. Pray for her and for his nurses.

The good news about Silas-small though it may seem to you, it is big to us-is that he is taking a pacifier. Not just taking it but doing the whole rooting thing when it touches his cheek, latching on and sucking like crazy. Getting him nursing when he is able will be a huge hurdle to overcome. Another good thing is that that same nurse I complained about earlier washed Silas' hair for the first time ever this morning. He was three weeks old yesterday. We discovered he really doesn't have black hair; it is a deep rich brown color. He's definitely my grandson. And it is so nice to kiss that sweet smelling head.

I am home now with the other three children. They are all suffering from sniffles and Jerusha has poison oak on her face. They were happy to see me and are settled back in. I'll stay here with them for the time being. We talked a bit about their wonderful dog that died the other night. Chuck, hero that he is, buried Juno in the vineyard by where the kids go on their walk every day. This was good closure for them. They had a little funeral for him and the sweet people who were caring for him gave them a lovely rock to mark his grave. The kids were sad but excited because Juno's care giver promised them one of her Dane puppies when she has some. (I was thinking more along the lines of rescuing a full grown animal that was over the puppy stage, so if anybody knows of one that is good with kids let us know.)

Nanette is doing well, recovering nicely from her second surgery. She had some more leakage from her little incision but the doctors decided it was okay. She doesn't have any breathing apparatus on her face and she is wearing the socks-that-look-like-shoes that Tanaya and Albert gave her. She even had a tiny bow in her fuzzy blond hair today. Her daddy came for a couple of days for the surgery and we were concerned about him because he looked so worn out. He had to go home again to Walla Walla, Washington, with the other two children and go back to work.

Aunna's daddy, Dustin, also looked completely worn out. He had been up for a day or two without sleep and had to return to work. Aunna is maintaining but oh, so tiny. Her weight has gone up by two ounces since she was born I believe. She is over a pound but I can't remember exactly what her weight is.

[Tanaya adds- Aunna was 1 pound 9 ounces at birth and is now 2 pounds 1 ounce. Praise God for His mighty miracles!]

Thanks so much for praying.

Jeannie




May 1, 2006 pm

From Jeannie:

Another day for Silas. Tanaya and I are arguing about the kind of day Silas had. She thinks he had an okay day because there weren't any crashes. I think he had a bad day because he spent most of it vomiting. Personally I think that vomiting is the next worst thing to dying, but now that I really think about it he didn't have that bad a day. Anyway. . . .

The doctors/nurses are thinking that they are increasing his milk intake too fast and that might be what the vomiting is all about. His digestive system just doesn't seem to be up and running smoothly yet. His oxygen levels are great with a little help from the canulas. His liver is a little enlarged but there are several reasons this could be happening. They will keep on eye on it.

We are really tired tonight. I am feeling torn because tomorrow Albert comes and I go home to be with the other children, and no Juno.

God bless you all and thank you for praying.

Love, Jeannie



May 1, 2006

Tanaya is, hopefully, sleeping as I write. She has gone without sleep in
order to be with Silas at his special times. The nurses let her change
his diaper every three hours, and she takes his temperature and weighs
his diapers. She just longs to get her hands on him. The whole milk
expressing thing is exhausting too. The mothers at the Ronald McDonald
House who are saving their milk for their sick babies all look tired.
They also have a look that hovers between dread and resignation. It
isn't a nice look but everyone seems to have it and it is almost a
comfort because they aren't alone in this nightmare they are going
through. It is weird but when someone's baby/child does a little better
the parents almost feel bad because someone else's child might not be
doing well at all.

Our good friend, Marilyn Arthur told us about a church her aunt used to
attend when she lived here in Portland. When Marilyn and Tom had their
son Teddy who had so many problems and needed special care this church
helped them out a lot. Well, Marilyn called her Aunt in South Carolina
who contacted the Pastor of this church. Long story short this wonderful
Pastor and his wife drove twenty miles out of their way to pick us up
for church this morning. We were able to attend Sunday School, the
worship and teaching, and we shared a delicious potluck afterwards.
Tanaya and I cried because the Pastor introduced us to the congregation
and told them that we had the baby they have been praying for, little
Silas. The love and compassion we felt from those lovely people was
overwhelming. This is what Christ means when He tells us they'll know we
are Christians by our love. They are making arrangements for us to go
again next week and one lady is going to help run errands for Tanaya.

This morning Tanaya ran over to the hospital to check on Silas before we
left for church. Low and behold he was off the CPAP machine! She came
back singing and laughing. She said that the nurse told her she'd be
able to hold Silas this afternoon. We were very encouraged.

From the time Silas was born he has never had any clothing on, just a
diaper. He has never been wrapped or had a blanket on his body. He is
always laid on his back with his head anchored to something or other.
Today (the day before he turns three weeks old) I walked into the
hospital after church and saw him without a breathing apparatus on his
face, just a little canula administering oxygen. He had a t-shirt on and
was wrapped tightly in a blanket. I started to sob. I never know exactly
what goes on in my brain to make me do something like that. I've decided
that it must be going on in my heart instead, because if my brain was
engaged I'd be laughing instead. I might just as well quit beating
myself up about it because it never does any good anyway. I never
thought of myself as a weeper before, but that was in my pre Silas days.

The doctors continue to do their tight walk with Silas to juggle
administering drugs, withdrawing drugs, giving blood transfusions and
platelets, changing breathing apparatus', ordering blood gas tests,
x-rays, organ checks-like the lungs, liver and kidneys (drugs damage
these), blood cultures to check on the infection, etc., etc. They
measure everything that goes in and everything that comes out. He is on
lasix to get rid of water retention. He is on a nourishment drip and is
having lipids dripped in too. He has a morphine machine and another one
but I don't know what it contains. A positive thing is that Silas is
back on breast milk and the amount is being increased at almost every
feeding. They have a little tube that runs through his mouth into his
stomach and gravity feeds the milk in at a rate programmed into a
dispensing machine. His bowels are starting to work and he has started
spitting up a bit. There is a lot of pressure to get him up and running
on this good stuff because the one line they have into his body
administering everything else is through his jugular artery and they
don't want to risk an infection there, or a collapsed artery, or
anything else that might go wrong with it. It is a precious vehicle
right now but its time is short. It will last just a week from the time
it was started. This line was put in by a surgeon who was trying to
avoid doing the surgical procedure that would plant a line into his
chest. Surgery would be a major setback for Silas. For one thing he
would have to go back on the intubation ventilator. Already his sucking
reflex has been seriously compromised from his weeks on that machine.
The surgery was also absolutely forbidden by the blood disease
specialist who said that Silas should not undergo any surgery with the
infections he had in his lungs and in his blood. The doctors in charge
of Silas at any given moment have to take all the varied information
they get from all the different specialists and make a decision,
weighing one against the other. It is not a job I'd like to have. He
also has respiratory specialists who hover over those machines and
computers every few hours (it used to be every few minutes).

Something wonderful happened this afternoon. A nurse who had never had
charge of Silas before asked if Tanaya would like to hold him. You can
imagine her reaction. After he was situated on her lap with all the
lines and tubes accounted for and taped onto the arm of the chair, I
went around and around taking pictures of him from every angle. She
stayed for three hours gazing into his peaceful, exposed face. Then she
had to deal with the milk thing so I spent the next hour with him in my
arms. We felt like he really looked around today, like he was becoming
aware of his world. We reluctantly left at change of shift when all
visitors had to leave. Tanaya went back after supper to hold him some
more and discovered that the day nurse had gotten into terrible trouble
for letting us hold the boy. Our wonderful Dr. Larry, the Big Cheese,
nearly came unglued because of the potential damage to the line in
Silas' neck. The poor nurse had no idea she shouldn't have done it
because Dr. hadn't written it in his report. Tanaya came home saying,
"God did that just for us because He wanted us to hold Silas."

Tomorrow or Tuesday an eye specialist will determine whether Silas has a
fungus in his eyes or not. Tomorrow he is supposed to have a brain scan.
We still wait for his lungs to clear completely and for the blood
infection to be gone. We wait for the morphine withdrawals to be over
and that drip taken away. We wait for so many things but we know that as
we wait Jesus holds our little Silas in the palm of His ample hand.

Thank you all for praying.

Love, Jeannie



April 30, 2006 am

Our baby had a good night. He has gone 20 hours without a fever. He is
taking a whole ounce of milk at a time and digesting it all. They are
giving him colostrum now. A wonderful nurse, last night, laid him on his
tummy, CPAP and all. His nose was all mushed against the little pipes and
hoses and he was more content than we have seen him. This morning he was
dressed in a onesie like a normal baby. We just love this older nurse that
sometimes has him at night. She just doesn't take any guff from the
doctors or anybody and she does what she thinks is best and that is what
has led to Silas' steps forward in the past. Her name is Kathy, too.
Tanaya and I are off to a church that Marilyn Arthur recommended. The
Pastor and his wife are picking us up. We are excited. Oh, it's a good day
so far. We love you guys! Jeannie

From last night:

We are here tonight talkling to this girl, Amanda, whose baby was born at
6 months and 1 day gestation. Baby's name is Aunna. She weighed 1 pound 9
ounces and her head is not even as big as a tennis ball. She is less than a foot long and has no
body fat what-so-ever. They are from Moumoth, Oregon. Aunna is now 2 pounds one ounce.
This girl is very discouraged. I told her that we would put her on our
prayer chain. Please pray for this little family. The dad's name is
Dustin. the doctors have told this couple repeatedly that the baby
probably won't make it. She wants her baby to live! Please pray for this
family.

April 29, 2006

Wow! I am actually sitting down to write my update before midnight! Silas is having a better day today. The highlight for me was holding him in my arms for about 45 minutes. Our favorite nurse, Kathy, was on today and she said, "What? you haven't held him since I've been off? Well let's get him in your arms then." So in between his scrunching up from gas (he is getting more mommy milk through the NG tube) I got to stare at his perfect little face. Well, I got to stare at his chin and his eyes. Well, one eye. His cap kept sliding down over one eye. (The cap is part of the CPAP and holds the tubes in place.) But all in all it was a wonderful experience. My mom took 100 pictures and I had to watch that she didn't trip over Silas' tubes and hoses, etc., in her enthusiasm.

A couple of humorous tidbits from yesterday that I was too tired to write about: Albert and I went to Fred Meyer to buy a giant cooler to haul home some breast milk that is piling up at Ronald McDonald House and at the hospital. (There are at least 7 mothers expressing milk for their babies.) As we went through check out, the clerk asked what we were doing that we needed such a big cooler. Albert, hero that he is, always looking out for my best interests, delicate in every word he utters, promptly told her, "We're taking home my wife's breast milk." You know those moments when you wish the floor would just open up and swallow you? I was compelled to explain the situation by the look on the poor girl's face and her response of, "Oh."

Then at Ronald McDonald House, when we had loaded the cooler, and I do mean filled to the brim, some people asked if we were moving out. Albert said, "No we are just moving out the milk!" They responded with, "Wow, how long HAVE you been here?"

"Oh, just two weeks," Albert replied. I felt like . . . Well, I felt like saying, "Moooooooooo!"

When I said good bye to the kids, Albert was hugging me and told me to hold still. He proceeded to pluck a hair from my bangs that was completely white! I'm in shock! Especially when he told me that it wasn't a lonely white hair.

Tonight Albert and the kids went to Cowboy Church. I long for the day I can join my church family again. I had missed a whole bunch of services due to 8 weeks of nasty cold/flu garbage. And then I was put on bed rest and then Silas made his entrance in a flurry. So it has been about 3 months since I've gotten to hear "I'll Fly Away" as only Cowboy Church sings it. I desire to see the wonderful friends I've made there and hug them as they help share in my burdens and my blessings. I got choked up as Albert told me about the guys in leadership who took him aside before church even started and prayed over him for Silas and our entire family. I was moved to tears when Savannah told me about Laurie praying with her and for her about Silas and about losing Juno (Mom will tell you about that as it is still too raw for me). I love my church family.

Nanette is stable today, however her mommy, Joanne, has the flu. It is such a hard thing not being able to go see your child especially when you know how sick they are. Because of the surgery and the infection, Nanette is back on the ventilator and the heavy narcotics. It feels like square one all over again for the Cooke family.

Joshua, a little boy born on Jan. 28th, 2006 with the same kind of hole in his diaphragm as Nannette had, is going to be possibly going home in two weeks. His mom, Becky, has been by his side these long three months. After multiple surgeries he is left with only two thirds of his bowels. This means he needs predigested food. She continues to express milk (sounds much more dignified than pumping) and they give him just two ounces a day. She is at a loss about what to do with the milk. Three times her sister has come with huge coolers to haul it away and today she was told she needs to clear it out again. Oh, the problems some of us must deal with.

There is a new baby across from Silas that has the same problem as Nanette. He is from White City and his name is Cayden Eugene. He had his surgery yesterday and is doing well. My mom is determined to invite this family to Cowboy Church.

Thank you all again for praying and for your support. We have been enjoying your emails. It is good to think that life is going on and we may be able to rejoin it one of these days.

Love, Tanaya



From Jeannie:

Albert and the kids left for home yesterday and when Tanaya and I walked back into that little bedroom that we have all shared for the past week, I wanted to weep because I missed those kids so much.

Yesterday was a really hard day for me. I just couldn't quit crying over our little Silas. Each time I cry my nose runs, each time I blow I have to wash my hands. I was washing them about every seven to ten minutes. They feel like I've been working in the garden all summer without gloves! I really wasn't looking forward to taking Liesel, our favorite nurse's daughter's graduation pictures in the afternoon. I was discussing it with the Lord and telling Him He'd have to do it all because my heart and brain weren't in it. Well, Kathy and Liesel came with little Peanut, Liesel's younger sister Olivia, and Tanaya joined us for the shoot. There was no pressure and we relaxed and enjoyed ourselves. How we love our Kathy and her family. Tanaya says that Liesel reminds her of herself at that age. Now I know how to pray for Kathy! Ha! I learned a wonderful lesson yesterday. To take my mind off of my problems I just need to do something to bless somebody else. The pictures are beautiful.

I felt discouraged again last night as we left the hospital after midnight. Silas' fever was back. They were administering Tylenol in a suppository. We called around 4:30 am and they were giving him more morphine for his agitation. He was quiet this morning (no wonder with all the drugs he's getting!). The wonderful doctor that is in charge for the weekend spent a long time visiting with us and answering our myriad questions. He is the one they call The Big Cheese. He is so nice-like a sweet tempered grandpa-you can tell how much the nurses and other doctors like him when he walks up. Kathy told us he is thinking of retiring and they are all sad about it. He told me that Silas' infections coming off of ECMO were unusual, and shared his theories on how he got them. He thinks they came from having lines--IV's and intubation tube down his throat into his lungs, etc. - in for more than a week at a time. He also explained about the drug withdrawal and what a touchy situation that puts the little guy in. He said that one of the reasons Silas could be running low grade fevers is from the drug withdrawal. His lungs have cleared a lot, just one dark spot left in one lung. Kathy says that they don't sound raspy anymore. They continue to grow cultures in his blood to keep on top of that infection. He told us they got to that one early. He will order a brian scan for Monday to see what is going on in that part of his body. They did one last Monday but it was inconclusive because the machine couldn't accuratly see with the ventilator he was on. They will also try to take Silas off of the CPAP on Monday, baring anymore set backs. Then he would just need canulas administering oxygen under his nose which is no big deal. (He is having 30% extra oxygen delivered through the CPAP, but he is breathing on his own. The machine actually aids him by forcing air into his lungs and he must resist it with his breaths. This means his lungs don't have to work as hard and they can't collapse. Tanaya described his situation perfectly when she called it a tightrope the doctors are walking on. These little bodies are so tiny and frail and sensitive. We are amazed at how well the care givers know them.

But as good as the care givers are there is no replacement for family. Tanaya, Albert and I spend a good part of each day standing at Silas' bedside with our hands on his little/chubby body, helping him to feel more like he is being held. He loves it so much. He can be all agitated but when those big warm hands tuck him into their grasp he relaxes almost immediately. He also responds to our voices and to soft singing (it has to be soft because they would run me out of there if they heard how bad I sound). His care givers are pretty sure that his jitters and twitches are from drug withdrawal but even they settle down under our touch. It has to be a firm steady touch, no rubbing or caressing. The nurses tell us that babies need to feel resistance with our touch to feel like they are still in the womb.

A really really sad thing happened to Tanaya's family last night and she got the call this morning. Juno, their beloved Great Dane, died last night. Cindi had been taking such wonderful care of him. He was in seventh heaven, living inside the house, sleeping on her son's bed, and sharing romps with her other two Danes. Apparently the family was doing yard work and Juno was snapping at some bees that were bothering him. Cindy scolded him because she'd had to take one of her Dane's to the vet with an allergic reaction from a bee sting. Cindi thought her son took Juno into the house and the son thought Juno was outside with his mom and it was a couple hours before they missed him. When they finally sent the other dogs after him they were led to his body. He was laying in the field dead with foam at his mouth. The vet thinks he might have died of anafalactic (sp) shock from bee stings. Tanaya told the children over the phone this morning. She told Savannah first and Micah heard Savannah crying and thought that it was Silas that had died. Poor little bum cried as much in relief that it wasn't Silas as he did over his best buddy, Juno. Jerusha cried for a minute and then asked if she could finish watching the movie. Daddy said sure!

Thank you all for caring about us and our troubles. We really do complain a lot don't we? (Retorical question.Tanaya says, "Don't answer.")- Really, in between the tears we are having fun too. Especially on the days that Silas hasn't crashed. God bless you all.

Love, Jeannie



April 28, 2006

My Dear Friends (the ones I know and the ones I don't),

Another day and another ride on the NICU rollercoaster. We wake in the morning, dragging our exhausted bodies out of the warm bed wondering what ride we will take today. Will it be a favorable day with the coaster car climbing up the steep hill overcoming the obstacles of gravity and friction? Or will today be a day that we plummet back to earth at breakneck speed with our hearts in our throat feeling death awaiting us around the next turn? --------- Yes.

On any given day in the NICU, someone is doing better, eating more, coming off of some life saving, horrendous machine. And there is always someone who has taken a turn for the worse, developed an infection, or had a blood clot. Emotions are raw and real at all times. It is an amazing little world we are living in. More real than anything in the outside world and yet so surreal it feels as though we've been wisked away to another dimension. There are no masks being worn to hide what people are really feeling. (In fact, I hardly even wear make-up anymore as evidenced by a nurses chipper remark when I had on lipstick this morning: "My you look nice today. Isn't it amazing how much a little bit of make-up helps us!"-------- Gee thanks. Have I really been looking THAT bad?!? She actually meant that it helps how we feel when we put a little make-up on. I gave her a hard time about the comment though.) ; -)

Anyway, for Silas, today was a small climb up. His fever is not as bad as it has been and they have lowered his morphine dose again. This is a good thing, but it is hard to watch his little body get the shakes as he goes through withdrawal or watch him shiver with chills when his fever climbs. It is also hard to watch his medications being administered through his regular IV line in his foot now. He scrunches up his little face, tries to pull away and then makes this raspy little cry. How I wish I could slap the IV away and say, "Give it to me. I'll take it in his place." But instead, I hold his long fingered hand pressed gently against his chest and reassure him that if there were any other way for him to get better, I'd take that path instead of this one. But there isn't. And so, I chip another piece off my heart and chew on it as he squirms. My mom thinks that the only thing harder than watching your child go through this torture, is watching your grandbaby go through it. I don't even know if she is aware of it, but she actually groans for him and cries for him when he can't make the sounds come out.

One of the awesome developments today is his reaction to our touch. He has always responded well to our touch ever since we were first allowed to do more than look at him. But now that he is coming off morphine and is more aware of all that is around him, he needs the healing, calming, soothing nature of touch. There is a marked difference in his level of agitation when we hold our hands on him snugly than when we let go. He is at peace when there is skin contact. It is so encouraging to see him reacting like a normal infant should.

My older three kidos went home with Daddy today and I am loathe to go to bed in a room that doesn't have little children's' sleeping noises. I feel like I've just dismembered my body and sent parts of it away. I got to take Micah up to see Silas before he left. We spent 20 minutes standing by Silas' bedside with Micah asking, "So what does this do?" and, "What is that for?" When I wiped the slobber from Silas' mouth, Micah had to look away so he wouldn't gag. I said, "You're going to have to get a stronger stomach if you're going to be a dad." He responded with, "There are some things I am going to like about being a dad, and there are some things I am not." With all that surrounds his baby brother's little body, his major concern is the slobber. It amazes me what faith Micah has in the "when" Silas comes home and "when" he gets this or that tube out of his body instead of the ever invasive "if". I am missing all three of my dear children so much already and they've only just left.

Nanette had a free-fall day today. She had a lump in her side and was oozing slightly from one of her incision sites. When Dr. Newman pushed on the "lump", fecal matter squished out of the incision. She was rushed to emergency surgery where it was discovered that a piece of her bowel had gotten stuck or been pinched against her diaphragm. The bowel had developed a hole in it and also a hole in her diaphragm. I'll let you all read about the day from her daddy's perspective as well as see pictures of her little blonde head at Joe's blog site:

www.nanettecooke.blogspot.com

Pray for the Cookes as they endure, and pray for renewed strength and healing in Nanette's perfectly pink little body. Pray also for "the ones left out", the siblings of our Silas (Micah, Savannah and Jerusha) and Nanette (Katie and Carter). Pray that they will weather the storm in battened down ships impervious to the waves crashing around them. Pray that God would fill them with His love in the places that we, as parents of very sick infants, can't fill right now. Thank-you all for your kind words of encouragement I receive every day.

Love, Tanaya



April 27, 2006

Dear Friends,
My mom and I just returned from our late night visit to see Silas. My mom is helping me write this because I'm so exhausted. Today has been another very difficult day for our little Silas. He continues to struggle with his infections. The doctors have been very reluctant to surgically insert a PIC into him because of the complications that go along with surgery, not the least of which is the difficulty he is having overcoming these infections he's dealing with. Sooooooooo today they tried again and again and again to put in IV's. One early this morning when Albert was there and two more in the later morning just before my mom got there. Then this afternoon a surgeon tried to put a line into one side of his groin and that didn't work either. He came back a few hours later and tried the other side. It too, was unsuccessful. Finally he put a line into Silas' neck into the carotid artery. It was successful and our boy won't need surgery immediately from what we can tell. Through this line they will be able to nourish him and administer drugs. I can't tell you how painful it was to watch that poor little baby being tormented all day long. And each time they would try something else they would drug him more. When you combine that with the CPAP, the contraption they have strapped onto his face, he looked like he was in a torture chamber. I had to send my mom away because I knew she couldn't handle it.
On top of everything else, for the first time, we had nurses that have been less than agreeable. I find this a very difficult thing to deal with. This afternoon Mom set up an appointment to take our favorite nurse, Kathy's daughter's photos, so I went along and cried my woes onto her shoulder. She has an ample one and she's not shy about lending it out, so I felt much better afterwards, especially when I learned she has issues with those same nurses. The pictures of Kathy's graduating daughter turned out wonderfully, obviously blessed by the Lord.
When we went over tonight and met the two newest nurses we were delighted with them. Now we can go to sleep because I feel comfortable with his care. (Last night I made Albert spend the night with him! Albert is my hero.)
Albert will head home on Saturday to deal with home stuff. He is taking the kids so they can live in their own house for a weekend and start school on Monday. Mom will wait here until he returns on Tuesday and then go home to care for them. At least that is the plan right now. The plans have a habit of changing at the last second, though.
I love you all and my mom and I especially love getting your emails. I apologize for not responding to them all personally but it is wonderful to hear from you. Tell us about what is happening in your lives, too. We feel like the rest of the world is standing still while we are dealing with this. It is good to get our minds off our troubles.



April 26 2006 (Silas' official due date)

Dear Friends,
Silas had a hard day today, therefore I had a hard day today. He is still on the CPAP (an oxygen machine that forces air into his lungs to keep them from collapsing when they are too tired to do it on their own). His infection in his lungs is E-Coli and the infection in his blood is yeast based. Both are treatable. The antibiotics are being administered. Because his body is busy fighting the infections he is not digesting any milk. In order to give him sustenance he needs a new IV line. The nurses/doctors have been trying for the past five days to thread a special PIC line through his vein to reach almost to his heart. This has now been attempted seven times. Each time his little veins collapse or they bump into a valve that won't let it through. Tomorrow they will surgically insert a line through his chest. This will mean more anesthesia, more morphine and more other drugs that they have been trying to wean him off of. The infection in his blood, the doctor's think, was caused by the umbilical IV line being in since birth. They try not to keep IV's open for more than one week and and his has been in more than two weeks.
Albert and I spent the whole day with Silas, sending Mom with the kids to go see the Oregon Museum of Science and Industry (OMNI). I was really torn because I had promised the children Albert and I would spend the day with them. But Silas was too sick. Try explaining to a four year old why her little brother needs you more. Thankfully they had a wonderful time with Mom. They had so much fun they couldn't decide what wonderful thing they did was the best. I am so grateful that I have such a wonderful mom.
Nanette is doing fantastically well. She drank her first bottle and did so well that she is now on a feeding schedule. Her mommy has mastitis and is feeling miserable, but is excited about her baby's progress. That family thanks you for your prayers. They were so excited today that a doctor tried to calm them down by saying things like, "She's not out of the woods yet, and she may need another surgery," but they decided they would worry about that if they needed to and to just enjoy the moment.
We are saying goodbye to some friends we've made here and meeting new ones almost daily. There are 24 rooms here and they are almost all full. Tonight some silent angels made a delicious supper for us, eliminating the necessity of scrambling to put something together after an emotionally draining day. May God richly bless those wonderful hands that prepare the food!
Albert and I are trying not to be too concerned about the latest developments in Silas' health but it is tough. Pray for us to draw together and to draw the other kids close to us. It is so easy to be short tempered and take it out on them. Mom is a good buffer but she's emotionally drained too. I got to spend 20 minutes with Savannah alone tonight and listen to her chatter about her wonderful day and about the latest two books she is reading (she has several going at once). She was quite put out that she didn't have every character's name memorized. I also spent time with Jerusha on my lap looking at photo albums of children whose families had stayed at the Ronald McDonald house in the past. She picked out a Jasmine (Caleb's daughter) look-alike saying, "This is SO Jasmine!" She is also putting on two princess dress up dresses from the play room every time we come back to the Ronald McDonald house. What a GIRL! I'll try to get time with Micah tomorrow if I can pry him off of the Nintendo machine.
The kids love it here. There is an outside play yard, an inside play room, a teen room, a library (Savannah's favorite), and lots of lounges. The hospital hosted a family movie night in the Hollywood Lounge set up with a big screen TV and chairs like a mini theater. Since Daddy took the kids to the family movie they each drank a pop, ate a bag of candy, and a bag of popcorn (all provided by the hospital). Needless to say, not one of them ate a bite of the supper Grammy and I had prepared.
We are praying that God will give us better news to relay tomorrow about Silas. God bless you all and thank you for your prayers.

Love, Tanaya



April 25, 2006

Dear Friends,
Today has been another up and down day for Silas, and for us. I
remember when the doctor warned me that for every two steps Silas
takes forward he would take one back. How true that has been and how
easily I forget.
I arrived at Ronald McDonald House at 10:30 p.m. on Sunday night.
After unpacking and getting Tanaya and Albert's other three kids
settled, Tanaya and I headed over to visit little Silas at the NICU
at midnight. Tanaya was practically jumping she was so excited about
his progress. He looked wonderful. No ECMO tubes snaking around him
looking like they were swallowing him up, and a reasonable amount of
machines/computers monitoring his every breath and vital sign. There
were still a ton of tubes and IV's to administer drugs, flush out
his tummy, inflate his lungs, etc., but nothing like before I left.
The care givers were all smiling, proud of his progress over the
past week since I saw him last. I've been telling myself all along to
take one day at a time and try not to let every new bit of information
sway me one way or the other, just put Silas' future in the Lord's hands.
But I was overwhelmed with how normal he looked, that he was trying to
open his eyes, his mummy's excitement, and the nurses words of
encouragement. I just couldn't quit crying. Were we really going to be
able to take this baby home?
The next morning the doctors were delighted to show us that they had
exchanged ventilators, and Silas was now able to turn his head a
little and he could be flipped onto his tummy for short periods of
time, which he loves. The new ventilator seemed to agree with him and
he was breathing more on his own. Later in the day as I kept vigil,
the nurses concern over a low grade fever escalated and she called
the doctor. I started crying again. Silas obviously had an infection
in his lungs. By nighttime they were calling it pneumonia. I felt
devastated. I'd gotten myself so excited about getting this boy
better and taking him home, and I just couldn't quit crying.
How small my faith is.
Now it's another day. While doing something with the ventilator this
morning they shut it off and Silas was breathing on his own so they
pulled out the tube (they think this is what caused the infection in his lungs).
They were giving him some oxygen through tubes into his nose but he
was breathing on his own. Yes, he still had pneumonia, and was
horribly congested, but his lungs were responding just the same.
Tonight the nurse took him out of his bed, with the dozens of tubes,
and placed him on Tanaya's lap for the first time. Our elation was
short lived. He became distressed and his
breathing became so erratic that they had to hook him up to another
ventilator, but not the invasive kind that requires a tube into his lungs.
This one shoots air through his nose and forces the lungs to expand,
making it less work for him. It is an awful contraption and he hates it,
but it is what is necessary right now. Maybe they can take him off of it
tomorrow.
A really wonderful thing that is happening is that Tanaya's milk is
being dripped into his tummy through a tube and he is digesting it.
They are slowly increasing the amounts. This eliminates the necessity
to have a PIC line into his chest for the time being. His little
shoulder is all bruised and swollen from the one that was dislodged
from his vein and spilled 'stuff' into his tissues.
So here I am. Now you all know what a pessimist I really am and I can
honestly tell you that my daughter's faith is growing mine. These
kids are doing an amazing job, staying cheerful and blessing the
folks around them. I watch people's faces light up when they come
into the room. They know many of the people here at Ronald McDonald
house by name. (Tonight they introduced me to a young girl whose baby
was born prematurely 19 months ago and who is back with him because
he has a terrible aggressive form of cancer.) Nanette's family have
invited them to eat together more than once. The doctors and nurses
obviously take pleasure in them. I'm proud of their strength and
their character.
I can't begin to express my appreciation to you folks, too. Your
prayers mean so much to us. Your emails and phone calls are precious
to us and remind us that we are loved. I pray God blesses every one
of you wonderful prayer warriors.

Love, Jeannie

PS I just rode over to the hospital to say goodnight to Silas. (We get
security to come and get us at night because this is a really bad part of
town and they don't want to take a chance on us having to deal with bad
people) He is resting as comfortably as possible with the rude machine he
is on. Please pray it is only temporary. Also pray for Tanaya and Albert
to remain close through this trial. Today they were taking their kids to
the Science Museum and my car broke down and they spent several hours
dealing with it. They didn't make it to the museum. Pray for the other
kids to remember this as a good time rather than a bad one. Pray for me
to be an asset to them all.

PPS for those who were praying for Nanette, I received permission from her
folks to give you their precious girl's wed site. It is
www.nanettecooke.blogspot.com. You can check it out. She is
improving every day, but she didn't do her first major turn around until
they placed her in her mommy's arms. :) God is so good.