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.