June 29, 2006-A visit to the NICU

From Tanaya who is in Portland for Silas’ one-month-out-of-the-NICU check up:

Wow. We are back on the NICU roller coaster again, up here in Portland. I thought we'd escaped it to ride in a slightly bumpy horse-drawn buggy, where it jiggles you so and makes your teeth feel like they are falling out. But it seems we've been thrown back into the coaster car and strapped in for another ride. My own sentiments were aptly expressed by a lady with a child in the womb. He has just been diagnosed with very severe Congenital Diaphragmatic Hernia (CDH). She declared she doesn't remember purchasing any ticket for this ride and asks, "How the heck do I get off?!"

With regard to Silas' health, he is doing well. His blood pressure looks good and he is responding to stimulation with age appropriate and adorable smiles, stares and coos. He is mimicking sounds and sticking out his tongue when he sees us do it. He also tries to mimic blowing raspberries. He was successful once and it required a face washing for both Silas and his mommy. Life, in general, had been cruising along smoothly, other than hitting the occasional jarring potholes of colic. On Monday, however, after ten glorious days of exclusive nursing, Silas was weighed. The verdict? He hadn’t even gained an ounce. The bottom dropped out from under our roller coaster. We were plunging back to earth. I cried.

Our wonderful Dr. Williams is as perplexed as I over Silas’ lack of weight gain. He seemed to be taking in enough milk. I was nursing him every two hours from 8 am until 10 pm and then three or so times during the night. We decided to try the bottle every other feeding and see if he'd eat more because a bottle requires less work than nursing and doesn’t burn as many calories. I dreaded the hateful breast pump and anguished over the loss of precious bonding with Silas. But it would seem that our little man has a will of his own it is a stubborn one. He has been getting fussier with his bottle feedings and this evening he threw a tantrum that was immediately resolved when I nursed him. The little bear actually prefers nursing! Not only does he prefer it, he is refusing to take his nourishment from the bottle. While this brings no end of good to my mother's heart, it still means that his failure to grow needs to be addressed.

When Silas sees Dr. Jenkins, the nephrologists (kidney specialist) on Thursday (today, at 1:30), he will add a bunch of tests prescribed from the pediatrician to Silas’ lab work if Dr. Jenkins is going to draw blood anyway, to try and determine if there is a biological reason he is not gaining weight. He has already had his stool tested for residual fats. If fats had been found, which they weren't (praise the Lord), it would have meant Silas conclusively had cystic fibrosis, which inhibits proper growth. Since no fatty acids were found, they might test his blood for this and other things that could be the cause of him not growing.

I have been visiting my NICU friends here at Legacy and am thrilled to announce that Aunna, born at one pound nine ounces (three pounds when we left Portland four weeks ago) is now a whopping five pounds five ounces. She actually has a double chin and has rolls on her fat little thighs! Aunna had eye surgery and the doctors told Dustin and Amanda that her eyes did not need as much work as they had originally thought they would. She is doing very well. She is at 36 weeks gestation right now and the doctors are talking about sending her home in about three weeks. A Thank you to all who've prayed for her little miraculous life! And since you are all such wonderful prayer warriors, I'd like to ask that you pray for Amanda (Mommy) since she needs gallbladder surgery. It was scheduled for Friday, but her insurance won't pay for it to be done here in Portland. This means she needs to have it done back home and has to leave her precious babe. In addition, she will need to have a couple consultation appointments before the surgery will be done. It needs to be completed before they bring their baby girl home so that they can concentrate on Aunna's care.

Becky and Joshua are still awaiting their departure. On Wednesday the 21st, Becky packed her things, cleaned her room and checked out of the Ronald McDonald House. When she arrived at the NICU to check Joshua out, she was informed he had a slight fever. I can't imagine the disappointment she must have felt. That was always one of my great fears when we were trying to go home, and she had to live it. Joshua's fever seems to be gone now, but blood cultures are still coming back positive for two virulent bacteria. Dr. Nelson told her that if they can kill these nasty bugs, Joshua can go. If not, his broviac will need to replaced. That is where the critters are living. The broviac is an IV which is placed surgically. This would mean yet another infuriating surgery! Please pray that this beautiful boy will be able to go home with his mommy and not need another surgery.

Pray also for Becky as she maneuvers her way through this surreal life trying to fight for what she believes is best for her son and staying positive through it all. She had a virus and wasn't able to go to the hospital to see Joshua for three days. This was particularly difficult due to Joshua developing severe stranger anxiety. When I went with her to see him, he took one look at me and howled. Then when he saw his mommy's face he calmed right down. When he has caregivers that he knows it isn't an issue, but occasionally he has one he doesn't know and it is quite distressing for all involved. (By the way, Joshua turned five months old on June 28th.)

Rachel and Matt have delivered beautiful, blonde baby Judah. He is in the ladybug section under ladybug one where Nanette was located. It is encouraging to remember Nanette’s recovery and picture her beautiful blonde head with those piercing blue eyes. (I still go to her website now and again just to see her perfect little face stare at me over her mommy's shoulder.) Judah seems to be doing well so far, and is actually being weaned down on the nitric oxide as well as some meds. This is very encouraging for the family. Rachel is recovering exceptionally fast from her C-section, with Matt by her side as well as her mom, his parents and waves of bothers and sisters coming to visit. The only one who seems to be really struggling is their two year old, Asher. However, his struggles have less to do with the baby and much more to do with his own little sin nature. (Whoever says children are born as clean slates, and we, as parents, make their personalities by our actions has probably never had a child and most definitely never had a strong-willed child!) Asher reminds me of my own Jerusha; absolutely precious, but very difficult to discipline. [If you read this Matt and Rachel, all I'm going to say is good luck!]

When Albert and I arrived, I was anxious to meet the family with a CDH baby on ECMO. However, he slipped away the day we got here. I am once again filled with horror as I think of aching arms and watching your child go through a hellish nightmare. I can hardly believe that things like this have been happening throughout time and yet I was blissfully ignorant of it all. There are parents everywhere who go back to their homes and try to live their normal lives without their precious children. I am no longer ignorant. I am now keenly aware of their plights. Their sorrow pierces the depths of my soul. I long to comfort these families, but what can I say? I desire to help them, but what can I do? I can only offer my tears. There is no way to console and no way to fill their arms again. They've had a chunk of their heart torn from their chest and now sit in shock and devastation. That kind of damage may someday heal but will always leave an aching scar.

My dear friend and Silas' nurse, Kathy, was on when the ECMO baby passed. She came to see us this morning and I am once again in awe of all the amazing and strong people who work under these incredibly tense and emotionally draining circumstances. I personally turn into a puddle when I hear another child's story. Yet these doctors, respiratory therapists, and especially the nurses, not only witness the terrible circumstances of the event but then they also hold on their shoulders the responsibility of making life and death decisions in the blink of an eye. To take on such an awesome responsibility garners my utmost respect.

It was wonderful to hug Kathy again and thank her for her part in saving our Little Bear's life. When Silas's face almost split with his huge grin at her, she calmly responded with, "This is what makes it all worth while." She made Silas a beautiful quilt with Winnie the Pooh characters on it. How appropriate. Pooh bear is just another cuddly little bear like our own cuddly little bear. The quilt is big enough that it will fit on a normal bed, so Silas will have it snuggled next to his little body for a long time.

That is all my brain will remember to share tonight. It has been an emotional couple of days and I have a splitting headache either from stress or too much crying. Perhaps both. Thank you for continuing to pray for Silas and the other sick babies. Your prayers are helping to heal their little bodies and comfort the families.

Love, Tanaya

Addendum [Silas saw Dr. Jenkins and he informed us that our Little Bear’s high blood pressure issue is resolved. No more visits to his office are required. Praise God! We also watched and held our breath as Silas was weighed. . . He is now 11 pounds 13 ounces, up three ounces in four days. Praise His Holy Name!!!]


From Jeannie:

It is a comfort to know that the Portland doctors aren’t as concerned about Silas’ lack of weight gain. Tanaya is working hard getting more milk into the little guy. (She has her mother nagging her constantly just in case she forgets.) I try not to think about it too much, just turn my thoughts into prayers.

Things are quieter here on the home front. Savannah and Jerusha stayed home with Grammy and Papa. We’ve managed to do something fun every day but I am feeling weary.

Shahala, my daughter-Tanaya’s sister-is having a hard time with her broken tailbone and intermittent contractions (her baby is due on July 17th). A week ago she and Peter took their puppy to the park. They had her on a very long, thin nylon rope. Puppy Mia, in her enthusiasm, wrapped the rope around Shahala’s leg and caused a rope burn that gouged a trough of skin and muscle out of her leg, close to her ankle. After waiting a week Shahala finally went to the emergency room with the burn infected. The doctor told her it was the worst rope burn he’d ever seen. She also has a bad chest cold. I brought her home when the Kyne’s left for Portland with the baby, and she’s been sleeping on the couch and getting help to go to the ladies room. We are spoiling her with breakfast, lunch and dinner in bed! I’ve tried to be very careful and keep the kids away from anything that Shahala touches. So far so good. Peter will come and pick her up today. The doctor said her leg should be healed when the baby arrives. Please pray for complete healing, an efficient and ordinary delivery, and a healthy little girl, Zion Reign. Also pray that the rest of us don’t get her cold. Silas lungs, if he contracted it, could be severely compromised.

We are so appreciative of you all and ask the Lord’s blessings on you.

Love, Jeannie

June 20th, 2006

Today has been a little rough due to Silas’ colic, but all in all we are doing well. On Thursday we learned that Silas had gained five ounces in three days. Hooray!!! His pediatrician, Dr. Williams, said she was very pleased and that she was completely comfortable with me transitioning him to breastfeeding. Hooray again!!! Then, later on that day, when we checked his blood pressure, it was so low that Dr. Jenkins in Portland said to stop his blood pressure medication. Hooray again! The day I chose to try taking his bottle away was Saturday since everyone would be out of the house except us two.

Micah and his dad left with the Young Marines for Fallon, Nevada that day. They are staying on the largest Airforce base in the US. They get to examine decommissioned planes, hang out with Top Gun pilots, try out the flight simulator that pilots train in, and so many more exciting guy things. They are both having the time of their lives. What a wonderful opportunity for Albert to have fun and for Micah to be reminded that his dad cares about him very much.

Savannah had a father/daughter hike with her American Heritage Girls (AHG) and my dad, Papa, stood in as a substitute daddy. They hiked to the top of Lower Table Rock where, to everyone’s surprise, a plane landed. It just so happened that the pilot knew my dad, and, lucky for them, all the girls got their pictures taken in front of the plane before it took off again. (The leaders of AHG wondered if Dad had planned for this to take place!?!) Papa took her on his fancy motor bike and they visited Aunties and Uncles on the way home. Savannah came home rosy red from the sun and wind, and all visited out. It was a wonderful adventure.

(This is my sister Shahala holding Luke)

Jerusha attended her first baby shower with Grammy. (My sister, Shahala, is due July 17th. Her broken tailbone seems to be on the mend but I am concerned that it will be a problem during delivery. Please pray that the birth of her little girl would be as smooth and effortless as possible). Jerusha had a wonderful time; the highlight was the cake of course!

I must tell a “Jerusha/Savannah” story. When we had taken Silas to the pediatrician, the girls played with a barn and horses in the examination room. As I talked with Dr. Williams, Savannah was distressed that Jerusha had two of the horses in the loft and informed her that horses didn’t belong up there. Jerusha retorted, “Yes they can be up there. I’m breeding them.” If that wasn’t enough of a conversation stopper, the faux pa was amplified by Savannah’s response, “You can’t be breeding them. You have to have a stud to breed.”

The next few minutes were filled with my hasty explanations to the doctor about my parents’ Fjord stud. I am sure my face was ever so slightly tinged pink as I informed her that, to my knowledge, the girls didn’t really know what breeding was about, but that they had probably heard us speak of when the mare was bred, and such. Anyone who hasn’t had a child that speaks up at the most inopportune moments with the most inappropriate subjects has not had the pleasure of scrambling for an explanation and cannot possibly know the depths of embarrassment that it brings. Oh the advantages that come from living a ranch life.

After the baby shower, Grammy took Jerusha to garage sales and she came home with a huge bag of (you guessed it) plastic horses. When Jerusha inquired as to the gender of the horses, I told her she’d have to decide and pretend they were boys or girls. She then found one with a slight bump on its underside and showed me. She informed me that it was a boy horse because she could see its “peanuts”. I am still giggling over the mispronunciation. Jerusha had her birthday June 14th and is now a whopping five years old.

So, with everyone out of the house, Silas and I went to battle over feedings. He went for about eight hours without eating much. He’d latch on and then let go, arch his back and scream at me. (I can let him get mad now because his blood pressure and heart rate aren’t issues.) He was so mad that it was hard not to chuckle. Nursing is a lot harder work for him than eating from the bottle. Then, just after noon, he had a decent feeding. I was ecstatic. He still threw fits and let go a lot during the feeding, but by the end of the day he was nursing comfortably. Now he is solely nursing and doing fine. Of course the real test will be when he gets weighed on Monday, June 26th.

We are heading to Portland on the 27th, the same day my friend Rachel Southmaide is to deliver her baby, Judah, by C-section at Legacy Emanuel Hospital. Please pray for Judah’s CDH to be less severe than the doctors think, and that his transition to life outside the womb would be as smooth as possible. Pray, too, for a quick healing and speedy recovery for the little guy and for Rachel. God is THE miracle worker, something to which we can attest.

Rachel tells me that Becky and Joshua are still scheduled to go home. The tentative date is around the 21st. We will stop in at her home on our way up (or back down) to see them. Again, God is THE God of miracles. I cry when I think of that little family finally being home where they belong.

I can’t wait to see Amanda and Dustin and their tiny Aunna. I can’t even imagine how much she has grown. I will post pictures of them when I can.

I am also excited to see our dear nurse, Kathy. There are so many people I’m anxious to hear reports on. I feel like we’ve been away from family. I am also a little scared to go back to the NICU. I have an irrational fear that a weird vortex will open up and suck us back in. Will I be able to handle the emotions it will stir up? I still can’t read my first updates. They are just too raw. Some day I know that I will have to go through and process it all, but for now I am just thankful for every breath the Lord ordains for Silas.

Thank you for your continued prayers and concern,
Tanaya


From Jeannie:
Dear Praying Friends,

Thank you so much for keeping thoughts of us close to your hearts and lifting us up to the Father. What wonderful people you all are and how we love you so. I pray blessings for you, and especially those mystery people I haven’t met who read what we write. May God bless you beyond your imaginings.

Silas is doing so much better. He loves to talk and we rarely, if ever, see the frown that never left his face when we first brought him home. It has been replaced with many expressions, the most delightful of which are smiles and grins. He especially loves to have baths and we have all had our turn bathing with him. He’s a delight. We have never detected another seizure and he finally seems to be taking an adequate amount of milk. He could eat a lot more but he isn’t vomiting at all so he is getting all the benefit from what he takes in. Unfortunately he seems to be developing a lot more colic, and he gets especially fussy when he drives, but Tanaya is trying to test foods in her diet to see if there is something she could do to help in that direction. His check up was so good the doctor gave Tanaya ten days before he needs to be seen again. He doesn’t have to go in biweekly for blood pressure checks. What a relief!

Grammy (me) is enjoying life with the Kyne family. I wake up sleepy little people with hugs and rubs, and give them fruit salad with their breakfast. What to wear and how to spend the day are topics of great importance. It is a chore to keep their room clean—three share the same one—but everyone pitches in. Ms Jo-Anne, our wonderful school teacher, is on an extended trip to Canada—where she comes from—so we are having great fun filling up the school-less weeks. We’ve started horsemanship lessons with Auntie Kate and her sweet gentle Arab, Taboo. The kids are learning horse safety and etiquette. Savannah writes in her journal of how much she loves her Boo.

We’ve also started swimming lessons in town. We have a pool in the yard that makes us nervous with the kids living here. Knowing how to swim will be a great advantage and give our fragile nerves a rest. The pool requires high maintenance, so Papa is happy to have young people enjoy all his hard work.



Caleb and Lisa are proudly showing off their new baby boy. After spending a week with him they have decided he looks much more like a Luke than an Isaac, so they changed the paper work, and we now have a Luke Lawrence Bruce in the family.







Joshua is thrilled with a brother and pretty laid back about the whole baby thing (he is six).



Jasmine is starting to adjust, but it has been rough. She is nineteen months and can’t understand why mommy can’t pick her up anymore. (Lisa had a C-section and can’t lift.) We are all grateful Caleb has been able to take this time off work to help Lisa at home. She informed me, “He is doing everything!”




We are finally having those family gatherings I’ve been dreaming of since finding out our new grandchildren were arriving. (Tanaya is exposing Silas to healthy family members for the time being. He still has a ways to go before he can meet the general public because of the trauma his lungs have been through.) Father’s day found the crew out here for a steak barbeque and a rousing game of Stock Ticker. I believe when playing games and telling stories we are the noisiest family bar none.

Our latest stories are all about the Raccoon family that raided my pond for gold fish and have been wreaking havoc around the yard. Finnegan, German Shorthair Pointer and head of ranch security, has bagged five of them in the past three weeks. Of course he needs a little help from the Boss to finish them off. Chuck runs out in his bathrobe in the wee hours to try to get a shot at the snarling, hissing beasts, all the while missing Finny who is screaming like he’s being eaten alive. Especially humorous was the latest episode where Chuck, with flashlight battery dying and a gun in his other hand, scrambled around the deck looking through the slats, which have a space just big enough for a 22 shell to fit through, to pinpoint the coon for a shot. He finally wounded it while stretched on his belly staining to see under the deck. (It is almost more than I can handle when I think that Chuck might miss the coon and hit my dog in the dark, but he never has.) The wounded coon ran away through the horse pasture and into the canal where Chuck was positive Finny was being drowned. (Finny really has a sense for the dramatic and the pitches he can reach with his desperate barks are pretty impressive, especially when he throws in the, “I’m being killed!” pitch.) You must picture the dignified manager of Cascade Ranch in his bath robe at 3:00 am, in a tearing rush, trying to cross a barbwire fence with a gun and a flashlight in his hands, to save my dog from the murderous coon.

To change the subject I want to offer my services to any of you distraught people who think you need to see a doctor to remove a tick. I have become an expert at dealing with the little beggars. Jerusha has supplied me with several more opportunities to test my skills. Tanaya also argued with the clinic that performed the services for us the first two times, and we received much of our money back. I’m thinking that our ticks must be exceptionally abundant and aggressive this year. I pulled one off of my own scalp and partially removed a mole because of the remote likelihood it might be a tick as well. (I can get carried away at times. :D)

Please pray for continued patience for Chuck and me with the grandchildren and with the Kyne family living here. It is a blessing to be able to help and so much fun getting to know the grandchildren intimately, but we are getting along in years—it was Chuck’s fifty-ninth today—and our patience wears thin.

Pray for Tanaya to have wisdom in discovering what Silas needs to make his tummy more comfortable. She needs more sleep.

Pray for the Kynes’ Adult Foster Care Home to be licensed and up and running quickly to generate some income.

Pray for little Joshua in Portland to be able to take in enough food through his digestive system so that the doctors can discontinue the nourishment that is destroying his kidneys and liver.

Pray for Rachel and Matt’s baby, Judah,—due with a C-section on June 27—to have strong vitals and to not need the ECMO machine. Pray his surgery is successful with no complications afterwards.

So much to pray about! Thank you for praying.
Love, Jeannie

June 10th, 2006 (Silas is 2 months old!)

Dear Friends,

It has been two weeks exactly since we’ve come home. It is amazing how quickly time has flown by. Silas, who is now two months old, is becoming so much more aware of everything around him. It is beautiful to watch him staring and memorizing the faces of his siblings. They, in turn, are being so helpful with him. Savannah (8 ½ years old) especially takes pleasure in the presence of her baby brother. She loves to sit and hold him or just talk to him while he is lying down. I think she loves the fact that he likes to be held unlike our niece, Jasmine, who is only 18 months and wants to walk on her own. Savannah is so caring and has such a nurturing attitude toward Silas. She is going to make a great mommy some day.

Jerusha, however, (5 years old on June 14, 2006) wants to “play” with him. She doesn’t quite realize that, as an infant, he can’t be flopped around like one of her dolls. Even though I need to keep reprimanding her about being too rough around Silas, she remains unfazed and simply adores all things “baby”. Quite frequently I find myself hunting for the car seat, a blanket or some such item that she has requisitioned. When I find said item, inevitably it is filled with or wrapped around her dolls. We are giving Jerusha her own doll car seat for her birthday. . . Surprise, surprise, surprise!

Micah and his dad are off today participating in a Relay for Life program with the Young Marines. This is part of the community service the Young Marine organization does. The relay lasts 24 hours and it raises money to help cancer patients. The boys (and girls too!) are running/walking the track at the university in Ashland. At least two young marines will be on the track at all times and when their turn is over, they will participate in such strenuous activities as water gun fights, movies, contests, football, and whatever else the leaders have thought up to torture them with. The kids raised their goal of $5,000.00 and therefore the Commanding Officer, Mr. Chesney, is allowing them to do whatever they desire to his hair. He has given his word that he will wear it that way for 24 hours (after which he will promptly shave his head bald!). I can not think of enough good things to say about this program and if anyone is interested in more information, contact me at:

tanayakyne@hotmail.com

Or go to the Young Marine’s website:

www.youngmarines.com

Silas is starting to eat more at each feeding now and is waking about every 2 ½- 3 hours during the night to eat. I think he may be starting to make up for lost time. Next week I plan on removing the bottle completely and giving him 24 hours to see if he will transition to the breast. He is still, at this point, totally uninterested in nursing. I haven’t pushed the issue yet because I want to make sure he is gaining weight like he should so that he isn’t compromised and also because he has a little bit of a cold.

I have tried very hard to keep him isolated from the world to avoid compromising his not yet fully healed lungs, but it is difficult. Some well meaning, lovely people have wanted to see and touch him without being aware of his condition. I try to explain how a simple cold could land us back in the NICU, but I don’t think they really grasp the magnitude of what he has been through. One of the nurses at RVMC, where we get Silas’ blood pressure checked, started to lift the blanket off his car seat as she said, “Oh, I’ll just take a peak.” It just about kills me to insist that she not do it. I feel so mean and rude. And yet, my son’s health is still tenuous and I must be firm. I am torn because my desire to show my little miracle off is just as great as other people’s desire to see him. It is especially hard to not have all of our friends come see the little bear. Thank you all for your patience in this area. Please know that as soon as we get the okay from Silas’ pediatrician we will proudly take him places and introduce him to all the wonderful people who’ve been praying and hoping for his complete recovery.

In the mean time, we are taking him to doctor’s appointments every Monday and Thursday. The kids and I have appointments for dentists, doctors and hairdressers on the other days, not to mention cramming in a little grocery shopping. Since Silas can’t be exposed to other people’s germs, I have to coordinate appointments with Albert’s days off. (It is a good thing we got to spend so much time together in Portland because now it seems like we are two ships passing in the middle of a foggy night.) I think what I need is a personal secretary to keep track of and organize everything!

One thing we haven’t had to worry about is supper. We have been so blessed with the meals people are bringing. I was the recipient of meals once before when I injured my back and then had surgery. Then, as now, it is so wonderful to not have to think about trying to get supper on the table when there are so many other things I am trying to accomplish. Thank you to all the angel chefs diligently turning out delicious meals for our family.

I received an email from Nanette’s mom, JoAnn, today and I wanted to let everyone know that Nanette is doing fabulously. I’m told she is a content little thing and acts like a normal baby. She is gaining weight well and almost exclusively nursing now, with just one supplemental bottle a day. This gives me such hope for Silas. Please keep the Cookes in prayer as their family transitions to life with three munchkins. Their older kids are still struggling to establish their importance and place in the family dynamic just as mine are. A new baby is an adjustment anyway, but to have had Daddy and Mommy so absorbed with that new baby for so long. . . Well, it will take awhile to work out the wrinkles and establish new routines in our respective households.

I have fantastic news about Becky and Joshua. The doctors are again talking about sending them home. The goal date is June 20. Maybe when we go up for Silas’ nephrology appointment on June 29, we’ll be able to stop in at Becky’s house to visit her instead of going to “Ducky 8” in the NICU. Wouldn’t that be wonderful? To see them in their own home! Joshua is still throwing up but the acid in his stomach is under a lot better control now. It isn’t burning his skin like it was and the breakdown under his neck and on his bum is starting to heal. The doctors talked about doing another surgery and moving the gastric tube in his tummy down farther to prevent the vomiting. Becky emphatically said, “NO THANK-YOU!” She can’t wait to get that precious boy home.

I have bumped into Cayden’s mom twice since we’ve been back. He is the little boy from White City (near us) who was born with CDH just like Nanette and Joshua. He arrived in the NICU about three weeks after we did and he was discharged the same day as Silas. He is doing wonderfully and we hope to see them at cowboy church some day soon.
My brother and his wife had their baby, Isaac Lawrence, on June 8th. It was with great trepidation that I first learned there were complications. The little guy was turned face up and was stuck. Lisa had to have an emergency C-section and when they got him out, Isaac was limp and hardly breathing. He was rushed to the Rouge Valley NICU where he revived. He was brought back to his parents two hours later. The morphine really messed with poor Lisa and she had a hard time for a little while. It made her not be able to sleep and not think clearly. Then, the next day, the staff gave Lisa an anti-inflammatory which it turns out she is allergic to. She had a severe reaction to the medication, but they gave her Benadryl and things have calmed down. Praise God everything seems to be fine now. The thought of going through this whole NICU scenario again with another family member sends chills down my spine.

It remains heavy on my heart that there are so many families that are still in the midst of turmoil with a sick-child. There are also so many that have already gone through this terrible trial, and still more families who have their experience still ahead of them. I think of my friend, Rachel and her husband Matt. They are heading to Portland soon and are scheduled to have their little boy with a C-section at the end of June. His CDH (congenital diaphragmatic hernia) is quite serious and they’ve opted to deliver at Legacy where the ECMO machine is available if needed. Please pray for peace and God’s strength for the parents, healing and health for their son, and wisdom and skill for the doctors. They have a long road ahead of them and God will be by their side every step of the way with their little boy cradled gently in the palm of his hand.

June 8, 2006

Dear Folks,

Silas’ doctor had some encouraging words yesterday. Silas gained 2 ounces in 3 days. We are thrilled. Last time he gained 3 ounces in 6 days so his intake is coming up. He is having problems with gas bubbles in his tummy which causes him not to sleep anymore than half an hour without fussing. Tanaya and Albert are so tired. The Pediatrician said (we love this lady as we have all the doctors who have cared for Silas) Tanaya will soon need to try putting him onto the breast. You can’t imagine how excited Tanaya is about this prospect. Way back when Silas was in Portland Tanaya was told that he probably wouldn’t ever nurse. He milk supply instantly decreased by half. She is still making enough to keep filling him up and freezing a little extra. Please pray Silas will transition without too much trouble; when she offers it now he screams and will have nothing to do with it. I don’t know how they will get him to take it but Tanaya has the best lactation consultant in the world on her side. Not having to pump her milk would mean that life could get back to normal for the Kyne family—and me! (To our knowledge he hasn’t had another seizure. Tanaya did some studying on the internet and found out that 50% of babies who survive ECMO have to deal with some kind of seizures. The doctor doesn’t seem too concerned and we are hoping it was a one time occurrence.)

Lisa Bruce, my daughter in law, was induced yesterday morning and had her baby last night. He needed to be taken by emergency C-section. Lisa had pushed for a couple hours with no success. It turned out that he was presented with his head up instead of down and was jammed so tight against her pelvic bones that he has dents in his little head. He had some breathing issues when he was first born, too, that took a couple hours in the NICU to work themselves out, but he is now doing fine and nursing. (His name is Isaac Lawrence and he weighed 8 pounds 13 ounces and is 21 inches long. Lisa is a size one girl!) Lisa, however, has had a bad night. She hasn’t slept all night and is very agitated. This morning she had an allergic reaction to an anti inflammatory drug they gave her and she was hallucinating and feeling pretty bad. Please pray for her to have a calm spirit, to get some sleep and heal without complications. Thank you for praying.

Jeannie Bruce

June 5, 2006

Dear Folks,

Today has been a hard day for the Kyne/Bruce household. A family at Ronald McDonald House that we became friends with lost their baby yesterday. Their little one was on ECMO when we left. Please pray for this family. We didn’t ask for permission to talk about their baby, but she has a website that you can visit. We have been weeping for them.

http://spaces.msn.com/babyjolee/


Silas went in for his second visit to the Pediatrician this morning. His weight gain for the past week was minimal; just three ounces in six days. It is almost impossible to keep track of what he eats because he takes little dribbles at a time over a 45-60 minute segment of time. Tanaya tries to feed him every two hours during the day. He wants to eat a little more often than he did during the night and that is exciting. Instead of going seven hours he will wake up in about four. What isn’t exciting is that he seems to be colicky, and he fusses almost constantly. It is obvious he’s in pain. He isn’t sleeping for more than a half hour at time unless he’s tummy to tummy with someone. Tanaya is trying to care for him and pump. She is exhausted. Albert helps when he is home. He has gone back to work now. I help doing what I can. The doctor has decided to try to fortify his milk again. When they did this at the hospital he vomited violently and continuously. Please pray that the fortification will work without making him sick and that he starts gaining as a normal baby should.

Silas gave us a scare tonight. He passed out. He filled his diaper and went completely limp, unconscious. He was out for about three seconds and woke up confused. His blood pressure check at the hospital earlier today showed that it was lower than his normal, so we thought that might have something to do with fainting, but the doctor said it sounded more like a seizure than a faint. We are to watch him closely. We talked to our friend whose son has seizures and she agreed that it sounded like a seizure. She advised us what to watch for. It will be hard sleeping tonight. Please pray that this was a one time occurrence and that there isn’t anything serious wrong.

Silas is looking at us intensely. Up until now he’s always had a frown but more often we are seeing pleasant expressions on his sweet little face. It is thrilling. He is also responding to us with smiles and he tries to coo. He is waving his arms and legs. He may need physical therapy at some point a few months from now but he isn’t there yet. We were thinking about taking him to a chiropractor because of how wrenched and battered he was during delivery. (I don’t know if we told everyone that two nurses were trying to push him out while the doctor pulled on him during delivery. One nurse finally climbed up on Tanaya’s bed and pushed in a way that forced him out, breaking his collarbone in the process. I wanted to kiss this wonderful lady!) I wonder how many chiropractors work on babies. Maybe somebody who is reading this can advise us.

Tanaya and Albert’s other children have a couple weeks with no school. I’m trying to think of things to do with them. I’m open to suggestions.

The Kyne’s Adult Foster Care house is going to have a final inspection on Wednesday. God has given them a breather in getting this business started by having the first potential resident change her mind. The landlord has given them a break on their rent, but the house needs to fill up quickly to pay back the money they spent restoring and refitting it, not to mention the money being spent to maintain it right now. Tanaya has several people lined up to be care givers in her absence. I’m one of them. Albert’s new twelve hour shifts mean he is only gone three days a week so he will be able to devote lots of time to the residents’ care. We are hoping that a dear friend of ours from Cowboy Church will be their first resident. Please pray that God will bless their endeavor and bring wonderful residents to this lovely home in Lake Creek.

Lisa, my daughter-in-law, is going in to be induced on Thursday. Please pray for a safe delivery for her and our grandson—we don’t know his name yet. Both grandmas get to stay with Joshua and Jasmine while new Baby Bruce makes his entry into the world. Pray for the doctor, the same one who delivered Silas. Lisa is very ready to be un-pregnant. She has been having lots of tummy ailments and some contractions to contend with.

My daughter Shahala’s tailbone is mending. Her baby was positioned in such a way that the pressure broke the bone. I’d never heard of this happening before but since it did I’ve had several people tell me of similar experiences. Please pray that it completely heals and doesn’t interfere with her baby’s delivery in late July.


Thank you so much for praying.

Love, Jeannie

June 2, 2006

We are home.

It seems as though there should be nothing more to say than that; like it is the end of a story, the conclusion of a movie. And yet there is so much to say I don’t know where to begin.

The day we were to leave, my mom and I arrived at the NICU at 9 am to witness what was to us a disturbing scene. The nurse was carting Silas around on her hip shoving a bottle into his mouth. She then informed us she’d been trying to get him to take it for an hour. First of all, it is written all over his chart to call Mom if baby wakes up. She was his nurse once before so there is no reason she should not know this information. Second, the physical therapists have been working with us to help Silas regain his muscle tone and one of the things they said specifically applies to all babies who’ve lain prone for any length of time is that you do not carry them on your hip. This encourages the splayed leg behavior they’ve already developed. Third, my son has oral aversion. It takes a great deal of time and patience to persuade him to take a bottle. Not only had she been jamming this bottle into his mouth, but it was full of vitamins and Prilosec, both of which taste nasty. We’d been shown by other nurses how to put the medicines in a tiny bit of milk and feed it to him when he is most hungry before giving him the rest of the feeding. She had placed them all in a full bottle and been forcing it into his mouth. It took over three hours for me to get him to accept that stupid bottle again. Even then, he ate very little for the next day or so of feedings. (Now that we’ve been home awhile, he seems to be doing better again.)

I cannot express in words how shocked and angry I was at this nurse. When I asked why I wasn’t called, she replied that she didn’t know that that was what I’d wanted. Then I asked if I could please get some regular milk for Silas, without the junk in it. She said yes, but she wasn’t pleased. All that day, she acted as if she didn’t care the least bit about the kids in her care, she was just trying to check things off her “to do” list. The one other time she’d been Silas’ nurse, she’d been too busy with the other babies in her charge to have much interaction with us (thank goodness). I have had personality conflicts with other nurses and disagreements about care, but they have always had my child’s best interest at heart. Even when they haven’t been so kind to me, it was obviously because they thought they were doing what was best for Silas. I suppose that after six and a half weeks in the NICU and dozens of caregivers, to find just one that is truly awful is a statement about how wonderful the caregivers really are. Other than this person, the nurses HAVE been truly wonderful. Like I said, even the ones who weren’t as I’d have wished them to be had Silas’ recovery foremost in their minds.

When she finally led us out of the NICU my heart started to race and I felt like throwing up. I was just sure someone was going to be running up behind us saying, “Wait! You can’t go yet!” It was all I could do not to fly out those doors shouting, “He’s mine, now. He’s not yours any longer!” Wow. I can still hardly believe that it is over.

As exhilarating as it has been to take my little bear home, it has also been traumatic. It seems as if I’m always on the verge of tears. I’ve cried because I missed spring in our beautiful valley. I’ve cried because I didn’t get to see all the pastures fill up with babies. I cried when we drove up to my parents’ house and my parents’ dog, my sister’s dog and my brother’s dog came running around the corner. No Juno to welcome me home. I miss our dog with a great ache in my heart. I’ve missed my home, my friends, my bed, my kitchen, my town and, of greatest importance, my family. I have sorely missed our dear friends, the Cookes. I have missed sharing our caotic lives together and checking up on eachothers' babies. I miss the bleary eyed smiles JoAnn and I would exchange in the middle of the night as we were putting our expressed milk in the freezer. But the reason I’ve cried most is because of the dear friends I’ve left behind in the NICU.



Dustin and Amanda have given me permission to post their daughter's pictures on Silas' blogsite so that everyone who's been praying for her can see her. They also gave me a picture of Aunna when she was first born. Wow, is all I can say.



They still have months to go before they can take Aunna home. It is, however, such exciting news to report that Aunna is now over three pounds. Still such a tiny bundle, but she is growing and showing everyone around her how God does miracles.



What a fighter and, because of that, I’m sure she’ll be a handful someday for her parents! I can’t wait to see her having her two year old birthday party with Amanda trying to keep her from throwing a fit because she didn’t like the bow on her present or something! For right now though, her and her mommy are content with the simple gift of touch.



There are also so many others whom I care so deeply about: Trina with D.J., Jessica with 17 month old Serenity and twins Devon and Destiny, Emily and her family, the parents of the last three ECMO babies, and some whom I’ve never met, like the family of the little twin who’s been at Emanuel NICU for over seven months. . . I’ve not shared their stories in my emails, but they are etched deep in my heart. I now understand why people have reunions after they’ve shared such an intense experience such as this one. We get so entangled in each other’s emotional lives that we are forever knitted together in a kaleidoscope tapestry with every family a unique and vibrant set of colors.

And Becky. . . I just love this girl! Her cheery demeanor is contradicted by the dark, tired circles under her eyes and the pain mixed with love which is etched into her face when she looks at her son. Joshua is such a wonderful, beautiful boy who makes all who look at him fall head over heels. (Just ask the nurses!)He is ever ready with a smile and obviously loves his mommy so much.




They have at least another month in the NICU after complications with his last surgery. The surgeon discovered that his liver and other organs were so enlarged that they had pushed his stomach out of easy reach. And because the surgeons had to mess with all the organs in order to get access to his tummy, his entire digestive tract shut down. If you didn’t know from previous emails, he only has a third of his bowel left anyway. He also developed a localized infection at the incision site.
I’d ask that everyone would pray that his little guts would start working and he’d stop vomiting from this last surgery. His IV nutrients are destroying his liver and kidneys. If he continues on these, he will need a liver and/or kidney transplant. I’d also ask that prayers be sent up for Becky’s peace and strength through this whole ordeal. She is such a great mom. She rarely leaves Joshua’s side. She is intimately involved in all his care and is devoting every minute possible to just being with him. Pray also that the surgeons and doctors in charge of Joshua’s care will have soft, compassionate hearts and will listen to her when Becky wants to try more natural approaches to some of Joshua’s care. Pray that they all treat her and her son with a gentle touch.

Since his birth on Jan.28th, Joshua is nearing the $2,000,000 mark for his care, at which point his insurance reaches its lifetime maximum benefit. I am prayerfully sure that the state would take over payment after that, but it is weighing heavily on Becky right now. Imagine, he’s not even half a year old and already he is maxing out his lifetime benefit. It feels unreal.







[I've taken this picture Becky gave me of Joshua when he was younger and touched it up for her on the computer. I've removed the feeding tube from his nose and the rash on his cheeks caused by the tape. Isn't he just darling?]





Silas and I were off Wednesday morning to visit Dr. Jenkins about Silas’ blood pressure. Dr. Jenkins treated Silas when he was on ECMO and he comes all the way from Portland to do a clinic here in Medford. We had hoped my little man’s blood pressure would still be stable and we wouldn’t have to give it another thought. Even though we didn’t get an accurate reading (he threw an absolute fit about the cuff), his slightly mottled coloring is cause for concern. We will be getting his pressure checked at RVMC twice a week and going to Portland once a month for thorough evaluations.

Then, in the afternoon, we met our pediatrician, Dr. Williams, for the first time and found out Silas is gaining weight but not even half of what a normal newborn would. I had taken liberties with his feedings and stopped fortifying his milk with formula. I wanted to see if he could make it on his own without the nasty fortifying formula which upsets his tummy. I figured I could give him a chance to see what he could do without all the micromanaging of every last drop. I have also been letting him sleep at night for as long as his little body needs to. He seems to sleep for a five or six hour stretch and then another three hours after he is fed and diapered. During the day time hours, however, I try not to let him go for more than two hours between feedings. I will find out on Monday when he gets weighed again if this strategy will work or if we’ll have to go back and reassess once more.

Here is a brief photo diary of Silas' journey:


This is at Providence Hospital shortly after birth. He is about to be transported to Rouge Valley NICU. We really had no clue how serious this whole situation was and how close we had (and would) come to losing our precious little bear.




These are the machines that God used to save his life. You can see the whole big ECMO (heart/lung bypass) machine, computerized IV dispensers, specialized bed and ventilator. If you look closely, you can just make out a thatch of black hair in the middle of all this seemingly sci-fi equipment.





This is what our little bearcub looked like while on ECMO. He was swollen with water retention and bruised from the traumatic birth. It is hard to believe this is the same child I now cradle in my arms and smother with kisses every day.







This picture was taken after he was diagnosed with ecoli pnemonia and yeast sepsis, a blood infection. He was so sick and I was grateful for the narcotics he was on.








He sleeps peacefully in this picture with all the tubes (except the nasal-gastric feeding tube in his nose) gone from his body .

Silas has loved baths from the beginning. He looks so serious and concerned but doesn't fuss. He just grunts and groans like any self-respecting bear cub would.










This is one of his nurses, Nancy, whom we caught carrying Silas in her vest: a little papoose.









And this is the most wonderful nurse ever, Kathy. She is a gem who's heart shines brightly for the wee ones in her care including her and her husband's own six children.














This was Silas' "big boy crib" and we worked on personalizing it.

This picture was taken by Linnea Osterberg, a professional photographer who comes through the NICU taking babies' pictures for free. From what I understand, her brother and his wife had a child who stayed in the NICU once and it touched her heart.

We can’t express enough how much we have appreciated all the helping hands that have gently brought comfort through this trial in our lives. We have felt the prayers through our very souls and have seen the wonder of the Lord’s mighty miracles because of them. I am in awe of the naivety in which I’ve lived. The little infants in Legacy Emanuel NICU number about 40 on average on any given day and every day there are small and giant miracles that Jesus performs. His omnipotence has never been more clear to me than when I’ve watched His moving in the NICU. Whether it has been life or death that He has chosen in His almighty wisdom, He is moving around and through every single one of those babies. Consequently, I have become keenly aware of the fact that He is also moving around and through every single one of us.

Likewise, when I see each exquisitely formed blade of grass I am reminded again that it doesn’t come close to comparing with the complexity with which we were formed. I’ve come to understand so much about the anatomy, physiology and biology of the human body and am amazed at the intricacy of it all. Most amazing is that He keeps in His mind every detail of our physical, emotional and spiritual structure! We truly are fearfully and wonderfully made by an awesome Lord. He alone sustains us whether or not we stop and realize it. It is by His grace alone that we are allowed to take another breath. How merciful is my Jesus to allow me to be a mom to four of His precious children which He made in His image. I praise His holy name!

By His grace, I will update the blogsite periodically. It will not be as consistently as it has been through this tumultuous adventure, but I believe that Silas’ story will be a gentle reminder to everyone that God is a very real person and that He is still doing His miracles in the twenty-first century. Thank-you to all who have joined us on this “journey through the NICU. . . and beyond.” God has used you to help sustain our family and He has used this experience to help us grow closer to Him and each other. Thank-you.

Love in Christ, Tanaya

May 31, 2006

Dear Friends,
We are so sorry that we haven’t given you an update for so long. Things have been pretty crazy around here lately. We brought Silas home on Saturday. My friend Karen brought my car up, spent the night and drove us home the next day. Tanaya and I got only a couple hours of sleep. It was pretty awful trying to get stuff packed up, clean up our room at Ronald McDonald House, do some general clean up (everyone who stays there is required to do their part in maintaining the house), deal with our fridge and cupboard food, etc, and say goodbye to folks, and take care of our sweet baby. In addition, Tanaya still needed to spend an hour at the hospital. We had little Silas tucked into a crib all the while we were taking care of things. At one point I was giving him his bottle and, when a little stream of bubbles escaped up the nipple, he jerked and frowned mightily at the sound. After he fell asleep I ran the vacuum cleaner next to his crib and he didn’t wiggle a toe. He has an amazing sense of hearing but is so used to loud, invasive sounds from NICU machines and he seems to prefer it noisy.

The trip home was very hard on Silas, so it was hard on us too. He continued to vomit, and the car seat splayed his legs and arms like they shouldn’t be splayed. We had to stop often for stretches of time. It was one of those trips you just wish was over before it started. Tanaya and I were having a hard time getting along. Thank goodness Karen was there making hormone jokes, bless her heart! I think we were pretty worn out.

After a trial night in their house the Kyne’s decided they’d like to live with us for the time being. Isn’t it wonderful the Lord gave Chuck and me such a big house? The grandkids are already used to staying here, and it didn’t take any time at all to bundle their parents into another spare room. It does mean that life is awfully busy--and noisy. I notice that Chuck spends lots of time reading in the bathtub lately, too. I’m not sure what is going on with the kids. They love having their parents back, but Albert started work yesterday, 12 hour shifts, and Tanaya’s time is completely consumed with pumping milk and taking care of Silas. This leaves them adrift and Jo-Anne, their teacher, and I are trying to fill the gap. We are all having issues. Life certainly is complicated. Pray especially for Jo-Anne and me to be patient, compassionate and maintain discipline.
Now to talk about Silas. Tanaya is working on an update so I’ll just give you a Grandmother’s perspective. He isn’t taking in enough nourishment to grow like he should. His little arms and legs are getting thin. You wouldn’t know it by looking at those fat cheeks, though. He is a really good baby in that he doesn’t cry for ‘no’ reason and he sleeps well. But he doesn’t smile either. His blackish/greenish eyes have this serious little frown like already the world has dealt him some pretty tough blows and he isn’t sure when or where another will land. He has lots of tummy pain and obstinate burps induce vomiting. He seems to be content when his tummy is molded to somebody else’s tummy, though. One thing that he really enjoys is his bath. (This is where his Papa, Chuck, becomes Silas' hero by giving him his bath.) Still with the serious frown, he obviously takes pleasure in the warm water and the soaping, rinsing process. He doesn’t even fuss much at the cloth on his face.

Tanaya took Silas to see doctors today and must go tomorrow, too. He has several and will need to see them as often as twice a week for the time being. He will also have to go to Portland once a month for a while. Please pray for this added burden on the Kyne’s finances. Bills are
starting to pour in. Silas will be exposed to many people through these visits, as well, and his health is so fragile. Pray for protection from communicable illnesses. Also pray that his appetite increases. He will take up to two ounces at a time but sometimes brings it back up. He should be gaining an ounce a day and he has only gained two ounces in the last six days. I’ll end my communication now and I thank you all again for your faithful prayers and concern for this little man. He is already a blessing to his family. May God fulfill all his plans for Silas’ life and may He bless you wonderful pray-ers.

Love, Jeannie