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.