July 20, 2006

I have added a few blogsites of children whose stories I've been following. Some babies have survived this horrible CDH birth defect and others, "angels", have not. For those of you who are interested, these families have awe-inspiring as well as heart-breaking stories to tell. I admire each and every one of these wonderful families and the painful journeys they've taken with their sick babies.

Love, ~Tanaya~

From Jeannie:

Thanks so much for your prayers. Shahala and Peter had their baby girl yesterday. Shahala did an amazing job. Shahala’s dear friend, Anna-Karen’s daughter and Judah Southmayd’s Aunty, helped with the coaching. Peter, Anna and I all had tears in our eyes when Zion Reign gazed into her mommy’s eyes while the doctor tended to some last minute details and did some stitching. I can’t tell you how wonderful it was to be part of a really good birth experience after the trauma of the past few months.

It was very exciting to show up at the hospital yesterday morning and find that our nurse was Kathy, the wonderful girl who saved Silas’ life (and Tanaya’s) by pushing him out of the womb. (She had to straddle Tanaya on the bed and use her whole weight to push on Tanaya’s tummy and she ended up breaking Silas’ collarbone to do it because he was stuck so tightly!) Kathy and her student nurse, Ashley, took very good care of us. Shahala was magnificent. The doctor didn’t need to give her anything to induce labor, just break her water, because she was already having contractions and partially dilated. Shahala has had such a rocky pregnancy she wasn’t sure she’d be able to go through everything without drugs or an epidural, but she did it totally on her own. Ashley was raving about how well Shahala did. And when that baby figured out how to nurse---it took about five seconds—Kathy bragged about having to wipe off dried milk from Zion’s lip when she gave the wee one her first bath at two hours old. Zion Reign weighs seven pounds five ounces and is twenty inches long. She was born at 1:44 pm on Tuesday and I got to press the buzzer that sends a lullaby throughout the hospital to let everyone know that a new baby is born. Zion’s grandparents—both sets—are still arguing about who she looks like but we all agree she is very cute!

Tanaya and Nurse Kathy had a tearful reunion after Shahala’s delivery. As a matter of fact, people were coming from all parts of the hospital to talk to Tanaya and Albert about Silas. Albert works there and the staff has been so supportive of the Kyne family through Silas’ long illness. Silas wowed a few of them in the parking lot where a breeze was blowing germs in a different direction.
Karen (Judah’s grandmother) was driving home from Portland when we called her with the news, and she started sobbing with relief and joy. I thank God that our two families have been able to support each other through our struggles. I don’t know if you folks knew that Karen’s daughter, Naomi, delivered twins while Silas was in the NICU in Portland, so even though their arms are empty because of Karen’s daughter, Rachel Southmayd’s baby Judah’s passing, they are filled with thriving Johnny and Zoe.

Karen has been an errand girl between Portland and the Rogue Valley for a new friend of Tanaya’s in Ashland who has twin babies that are allergic to anything but human milk. Tanaya has rallied all the NICU mothers to donate their stored breast milk for these precious babies. Becky, who has been pumping milk for Joshua since January 28, has filled cooler after cooler with frozen milk. Baby Nanette’s mother, Joanne, and others are pitching in, too.

Caleb is feeling a little better. His road rash is healing and his bones don’t feel as sore. Trevor is helping him finish his drywall job in the evenings and they expect to be done on Saturday. Trevor works for the Southmayd’s now, installing granite countertops. He couldn’t continue in the drywall business because he needed his evenings and weekends free for his ministry to the Junior High kids at Living Waters Church.

I must run and help the Kyne family get organized for moving out. Their room will be available for Mary Duke, Trevor’s third grade teacher—and a best friend of mine—who is coming tomorrow from California for a visit to help us figure out different ways to teach Micah to read. Mary specialized in teaching children with dyslexia (a politically incorrect term these days). She did wonders with Trevor and is anxious to see him again. It has been fourteen years since we’ve seen her.

Thank you all for praying for our extended family and friends. This has been a busy and productive season for our family, with lots of stretches along the way, but is has only drawn us closer to each other, and to our Lord Jesus, our sustainer. God bless you.

Love, Jeannie

July 14 & 18, 2006 Bittersweet

This was written July 14th, shortly after Judah passed away and I haven’t been ready to share it until now:

Dearest Friends,

I don’t even know where to begin. It is so strange the swirl of feelings that well up inside me at any given moment. Silas will blow a raspberry just as Albert finishes saying, “Do you love your daddy?” and we will both chuckle at his timing. Then I will be filled with an overwhelming sense of guilt that I get to watch my baby’s smile and the families of Jolee, Judah, and so many others won’t ever be able to even see their child’s face again. The next moment is filled with a determination to be the best mom I can be to my children as if I owe it to the mothers who’ve lost their children. I then realize that I screw up all the time in my parenting and another mom would most likely do a better job of loving and caring for their children, so I don’t deserve this opportunity to raise these precious kiddos. Yet I am so grateful for the oppurtunity to try. And I cherish the fact that I can press my ear to Silas’ chest and listen to his strong heart beat and the current of air flowing in and out of his strengthening lungs. It is like I am on a tiny raft in the middle of the vast ocean and my emotions are being tossed in every direction at the whim of the waves.

I have been changed through this whole NICU experience and I will never be the same. My faith has been, and is continually being, tested. I have relied entirely on the Lord to take us through this experience. I could not have survived without His strength and guidance. In the end, He gifted us with miracle after miracle and our son survived. However, I am still unsettled (and sometimes downright angry) about the babies who didn’t live. I find myself questioning why He didn’t allow Jolee, Judah and the other babies who’ve died to experience the same kind of miracle He granted us. It is not that I question His authority in these matters or His plan; I just feel that if I knew the reasons for it all, it would settle things in my heart. Then again, if I did understand all the reasons, wouldn’t that make me God? And if my desire is to be God, how am I any different than Satan and the fallen angels?

“‘For my thoughts are not your thoughts, neither are your ways my ways,’ declares the Lord. ‘As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts. As the rain and the snow come down from heaven and do not return to it without watering the earth and making it bud and flourish, so that it yields seed for the sower and bread for the eater, so is my word that goes out from my mouth: It will not return to me empty, but will accomplish what I desire and achieve the purpose for which I sent it.’”
~Isaiah 55:8-11~

I hope the Lord brings those verses to mind every time I think about usurping the sovereignty of God. It is not for me to know the reasons. It is for me to rest in the knowledge that He *IS* in control and that He knows far better than I what needs to happen on this earth. I will strengthen my certainty by remembering Psalm 71:19-21: “Your righteousness reaches to the skies, O God, you who have done great things. Who, O God, is like you? Though you have made me see troubles, many and bitter, you will restore my life again; from the depths of the earth you will again bring me up. You will increase my honor and comfort me once again.”

July 18, 2006

I feel completely spent today. Let me start by telling of the bittersweet memorial service for Judah Mathew Southmayd, held on Sunday, July 16th. My mom and I sat in the very back of a spacious sanctuary (to avoid exposing Silas to too many germs) and watched a slide show of Judah’s sixteen days outside of the womb. They were pictures of a beloved child who is no longer with us and who is missed by all who knew him and also by many who only knew *of* him. His life has touched so many others. Rachel, his mom, spoke and asked that no one be angry with God about Judah’s too short life here on earth. She was incredibly insightful when she pointed out that he was not created for this life, but for eternity. It was a poignant reminder of how fleeting life on earth is. It also made us think about a fact that many of us never come to grips with; we are created as eternal beings. Judah simply skipped this part of life and went straight to the Father’s arms. Rachel also spoke about how she’d been mourning the loss of life experiences for Judah such as graduations, marriage, having children, etc. Then she thought about all the awful things he’d never have to face as well. God took away all the pain he might ever have and made him whole in body, mind and spirit instantly. Judah’s memorial was a tearful, beautiful ceremony celebrating his short life here on earth and mourning our loss.

And life continues its wonderous, unceasing march onward. . .


I am now the proud aunty to yet another delightful little girl shown here in the arms of both my dad (her Papa), Chuck, and my mom, (her Grammy), Jeannie. My sister, Shahala, delivered Zion Reign Kroll at 1:44 pm. She weighed seven pounds five ounces, is twenty inches long and has a wonderfully loud cry. After hearing so many babies with weak or raspy cries in the NICU, it was delightful to hear that little girl belt out a howl. Both Mommy and Daddy (Peter) are absolutely thrilled with their first born and all are recovering well.

It was with great delight that I discovered that Shahala’s nurse was the same nurse who helped deliver Silas. Her name is Kathy (it seems all nurses who are named Kathy are absolutely wonderful!). I haven’t written much about my delivery as it was so horrible, but this nurse actually climbed onto my bed to push on my abdomen. At that point I had been on the verge of passing out, but having her use the full weight of her body to push on me somehow snapped me back enough to give one last push. That’s when Silas’ collarbone broke and he finally came out looking as purple as those dark purple/black grapes. She helped save not only his life but quite probably my own as well. I was thrilled to have Mom take a picture of her holding Silas.

I also saw Susan, the lactation consultant, who has called so many times to check up on Silas and me. She was an invaluable source of help to me when I had nursing issues after Jerusha was born and continues to help me to this day. I must say, if anyone in the Rouge Valley is trying to decide where to have their baby, the staff at Providence is absolutely splendid. Everyone from the desk clerks to the nurses is caring, kind and wonderful. And I’m not just saying that because my husband works there either! ;-)

In a much sadder tone, Becky’s Joshua is not doing well at all. He had his surgery to replace the broviac (the IV placed surgically into a vessel through the chest leading directly into the heart) which had been removed due to virulent infection. Afterward, it was discovered this second broviac had slipped out of place and had to be removed. In the meantime, his PIC line (another kind of IV threaded through a smaller vein up to the heart) perforated the vein wall and filled the surrounding tissues with fluid. Now the only options are to try a surgically inserted IV line through a femoral artery in his leg or to do nothing. Without an IV, Joshua cannot get the nutrients he needs to survive since he does not have sufficient intestines to digest and absorb an adequate amount of food. Please pray for my dear friend whose baby is almost six months old and has neither seen the sky nor felt a breeze on his face. She is truly at the end of her endurance and needs God’s strength to carry on as hers is utterly spent.

Nanette’s mom, JoAnn, was able to visit with her when they returned to Legacy for another post-op checkup. Nanette is doing wonderfully. Her cherubic face is absolutely kissable. I am told she is a content little thing and gaining weight well. You go girl!


It seems kind of strange to say, but I miss the Cooke family terribly. We lived together for over a month at the Ronald McDonald House and shared such an intense, difficult experience together that I feel bonded to them like they are part of my *own* family. I just want to hug them all and scream, “We made it! We survived!” and also see with my own eyes that they are truly okay. I still have dreams that something bad happens and I wake up scared and uneasy. That’s when I scroll through the pictures, look at that chubby little face of Nanette’s and am reassured that she and her family are fine.

Someone else from Legacy NICU who is doing better than fine is Aunna. She is doing so well that she is going home. Praise the Lord! In fact, Dustin and Amanda should be home with her as I type. She weighed seven pounds one ounce when I talked with Amanda on Saturday. To think that she was born into the world weighing only one pound nine ounces. Well, she certainly isn’t the tiniest baby in the NICU any more. Aunna ended up needing a shunt to drain the fluid off her brain, but she handled the surgery well and within two days she was back up to full feeds. I don’t know when Amanda will be having her gallbladder surgery but I will continue to pray for a speedy recovery when she does. I may be returning to Portland with Karen (Judah’s grandma) next week to see Becky, and if so, I will be able to stop in and visit Aunna (that big girl!) at her very own house.

I will also be able to be introduced to yet another CDH baby who has arrived in the NICU. Shanda, who took a tour of the NICU when Silas was on ECMO, has delivered Ryan Lewis. Born on July 13th, he was scheduled to have his corrective surgery today at 1 pm. They came all the way from Alaska to deliver at Legacy, and I will be praying that the wonderful doctors and nurses there can be used by God to save Ryan’s life. I find it a very good sign that he is having surgery without having had to go on ECMO yet. If the doctors think that they may need ECMO to stabilize them then baby’s surgeries are usually postponed due to the use of blood thinners while on the machine.

[Side note- Ya’ know, for a defect that is statistically quite rare, it sure seems like there are a lot of babies with CDH being born. There are many, many similar stories on the websites of families with CDH babies. I follow the websites of nine CDH kids, some who are surviving, some who’ve died and some who’ve yet to be born. It is an amazing community of people brought together by awful circumstances and shared experiences. I often find myself quoting Psalm 23 as I read of the struggles, trials, triumphs and defeats these families face. It is a Psalm most have heard but not truly listened to and it speaks comfort to the very marrow of my soul.]

“The Lord is my shepherd, I shall not want. He makes me lie down in green pastures, he leads me beside still waters, he restores my soul. He guides me in paths of righteousness for his name’s sake. Yea, though I walk through the valley of the shadow of death, I will fear no evil for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely goodness and mercy shall follow me all the days of my life, and I will dwell in the house of the Lord forever.”
~Psalm 23~

Thank you all for sharing my continuing journey through the NICU and beyond. Your prayers and support have brought and continue to bring comfort and strength through this ordeal.

With much love and a grateful heart, ~Tanaya~

July 12, 2006 - Saying Good-bye

It is with the greatest of sorrow that I write. Judah Mathew Southmayd passed out of this world today. He now resides in Glory while we on earth are left to grieve our loss. Continue to pray for Matt, Rachel, grandma Karen and the rest of the family who were all so intimatly touched by Judah in the cherished few days spent with him.

Matt and Rachel, I will constantly remember you in my prayers. I love you guys dearly. My heart longs to comfort you during this trial. May the Lord wrap His mighty hands around you both.

With all my love,
~Tanaya~

July 12, 2006 - Baby Judah

Dr. Newman told Matt and Rachel yesterday that there was nothing more medically to be done for Judah and that it was time to unplug the machine. Rachel asked for one more day and Dr. Newman agreed. Today they will remove Judah from ECMO life support. This is where we need God to perform a miracle and make Judah’s lungs and heart work enough to sustain his life. Please pray for Judah and his family.

Lord, we beseech You on behalf of the Southmayd family. Grant a miraculous healing in Judah’s tiny body. You *are* the great Physician. Place Your hands on his lungs and heart and make them function as they were designed by You to function. Heal his body, Lord. Allow him more time here on earth before You take him home with You. Grant Your peace that passes all understanding to Matt and Rachel. When we cannot understand a situation, we can still rest in the knowledge that You will take care of us. Thank-you for Your son who died on the cross so that we could have such an intimate relationship with You. Thank-you that You understand what it is like to have a child in pain. Thank-you that You will take care of Matt, Rachel, Judah and the rest of their family.

In hope and love,
~Tanaya~

July 10, 2006 - Difficult Times

Yesterday Silas was acting strangely and ran a bit of a fever. Under normal circumstances, I would have said, “Oh poor baby,” and comforted him through this time while his body fought off whatever infection it was. But these have been anything but normal circumstances. My dilemma was that if I took him to the ER, they were guaranteed to poke him with needles and Silas would have yet another traumatic experience in his life, not to mention exposing him to all those “sick germs” as my other children call them. On the other hand, I had nightmarish visions of yeast sepsis and e-coli pneumonia dancing in my memory. I turned to my husband for the final decision and he said we should wait and see if the fever gets higher or not. Within the hour Silas was no longer warm. I am so grateful I do not have the full weight of these decisions on my own shoulders but instead am protected by the strong arms of my husband. I can rest in the assurance that he will take care of us . . . Of me. I can’t even begin to imagine how much more difficult this whole ordeal would have been if I’d have had to go through it alone. I love you Babe.

In addition, my brother Caleb, Luke’s daddy (pictures posted previously), totaled his motorbike on the freeway when his front tire blew while trying to pass a semi truck. He managed to maintain control for a short period of time then was flipped off. A car accident ensured with cars behind him as they desperately tried to avoid running over his body as he scrambled to get himself off of the freeway. He remarkably doesn’t have a single broken bone but he did tear a chunk out of his right hand where the ER doctors could see his tendon. An injection of painkillers, some aggressive scrubbing of wounds, and a few stitches later, Caleb was taken home. He is now in a great deal of pain and not able to start his new job on Tuesday. Pray for Caleb and his wife, Lisa, who is grateful to not be a widow, as they navigate around this injury. And pray that Caleb’s pain will be eased and he will be able to go back to work just as quickly as possible.

Now for the hardest news; baby Judah is at the end of medical intervention. The doctors have told the family that they are not expecting him to make it. He needs a God-given miracle. Lord, please have mercy. Please don’t let any more babies die. I know this is an unreasonable request, but my entire soul screams “Noooooooooo!” It feels so horribly wrong when these cherished children take their last breaths and their loved ones watch them slip away to a place they cannot be followed. I know you take care of each one of these infants and that it breaks Your Father’s heart to watch the pain of the families left behind. It just seems so unfair that these families go home with crushed dreams, broken hearts and empty arms. I cry out to You for Judah’s life, Lord. You watched Your own son beaten and crucified. I know You understand the anguish Matt and Rachel are going through right now and that so many other dear friends I’ve made have already gone through. Please make Judah an exception to the statistics. Let his life be a testimony to You. Please let him go home with his family. Jesus, I trust You in all things. Your will be done on earth as it is in heaven.

With a hopeful heart,
~Tanaya~

July 9, 2006 Silas' buddy, Judah

Judah Southmayd has taken a turn for the worse. His ECMO machine is at maximum capacity to sustain his life. Please pray for a miracle from our Father in heaven to save this precious child's life. Pray also for Judah's parents, Matt and Rachel, and his grandma, Karen, as they cope with the situation and care for his big brother Asher who's going through the terrible twos. Thank-you for lifting this family up in prayer.

Love, Tanaya

July 8,2006 - Updates and Nursing Info.

I have just realized in the flurry of emotions about Judah that I had not informed everyone that Silas had gained five ounces at his doctor’s visit on Monday. That makes a total of eight ounces in seven days. Wonderful news! He is now right on track with what he should be gaining.

I have also discovered that there are very few resources for breast-feeding mothers who’ve had infants in the NICU. The issues we face are either not common enough for web sites to address, or people are just unaware of them. Most likely both statements contribute to the lack of information. However, I have discovered a few items of interest on the La Leche League International website that should be shared with all mothers of NICU babes. For that matter, they should be shared with doctors, nurses and lactation consultants who care for sick babies as well.

1.) Foremilk and Hindmilk: When a woman’s body produces milk, the fatty part, or cream, that is produced sticks to the fat cells which form it. The milk which the baby gets first is more like skim milk high in lactose and low in fat. This is called foremilk. The lactose is a carbohydrate and satiates the infant. It eases the panicked “I’m so hungry I think I might die” pangs and allows the infant to finish nursing at a controlled rate. The baby nursing stimulates the woman’s muscles to start contracting and squeezes the creamier milk down to the infant. This is called the hindmilk.

2.) Nursing Infants: An infant nurses for calories not quantities. If a baby is nursed on one side for a bit, he is getting the low-calorie foremilk. If he is then switched to the other side he gets even more low-calorie foremilk. This means he will need a much larger quantity of milk to satisfy his calorie needs. Since the foremilk has a great deal of lactose in it, this can lead to the baby developing colic. Infants are born with the ability to digest lactose (except in rare cases when the infant will die without a speedy diagnosis) but their guts can be overwhelmed with too much lactose. When not digested properly or in too high a quantity, lactose irritates the lining of the intestines and causes the infant to be gassy at both ends as well as highly uncomfortable; AKA: colic.

3.) What To Do: When nursing your infant, allow him to completely empty one side before offering him the other. In women who produce a high quantity of milk, this can be accomplished by offering your baby only one side during a two hour period. Anytime the infant wants to nurse during that two hours only offer him the one side so that he will be able to completely drain it and ingest the creamy hindmilk. When the two hours is up, switch to the other side and only feed your infant from the second side.

This strategy has helped with Silas’ colic. His guts seem to be working better. Instead of going for three, four and sometimes five days without a bowel movement, he now has a few poopie diapers per day.

Our little bear, at three months old, has already started rolling over. This is not usually expected in their development until babies are four months old. He has not only rolled from his back to his tummy with repeated scrunching movements, but he has also rolled from his tummy to his back. We are all thoroughly impressed.
Now for some updates on the other NICU babes I’ve spoken of before. Dustin and Amanda’s daughter, Aunna, still may need a shunt placed in her body. It is a time of wait and see. But they are still on schedule to leave at the end of July. No news yet about Amanda’s surgery.

Becky is having a tuff time. Joshua has gotten the button in his G-tube without incident however, the infection in his broviac, the permanent IV line in his chest, is infected with two antibiotic resistant strains of bacteria. The doctors can’t kill them. Becky was supposed to take the little guy home on Friday but instead they told her that his broviac had to be replaced. Today around five, Joshua was drugged and tomorrow morning the surgeon will remove the broviac. Then for the next four days they will slam Joshua with lots of heavy duty antibiotics. After that, he will go in for surgery to have a new broviac placed. Another surgery, another intubation. More hateful things shoved down his little throat. He already has such severe oral aversion that he vomits when a drop of water is placed on his tongue. Please pray for this to not be yet another major set back for Joshua’s recovery. Becky needs prayer as well to deal with it all. It just seems like too much for one woman to handle. Joshua will be six months old on the 28th of June and has not once stepped out of the NICU. Pray for comfort for both Becky and Joshua through this next step in their nightmarish NICU journey.

Matt and Rachel are hanging in there with baby Judah. He transitioned well to the second ECMO circuit but as of yet has shown no signs of improvement. Oh Lord, I pray with every fiber of my being that You would relax the muscles around his lungs allowing the blood to reach them. I also pray that his little heart would grow loud and strong with a life sustaining beat. Jesus, I pray for time; time for Matt and Rachel to get to know their cherished Judah. Time for him to play with his big brother Asher. Give us a miracle, Lord. You are the creator of all. I know You are capable of performing mighty miracles. I also know we live in a fallen world where sin has brought with it heartache for both mankind and Yourself. I rest in the knowledge that You are infinitely more knowledgeable than I in all things. I pray now with a mother’s heart for the life of my friend’s baby. Please take his body in Your gently hands and make it whole. Your will be done.

Always with love ~ Tanaya

Jeannie writes:

This is from my girlfriend, Karen, who helped so much when Silas was born, even driving to Portland in my car so she could bring us home. It is her little grandson, Judah that is on ECMO right now:

“I’m just sending the web address for my grandson, Judah Matthew Southmayd. He was born June 27th and is at Legacy Emanuel Hospital in Portland, OR, awaiting stable conditions so he can have surgery for CDH, congenital diaphragmatic hernia (a hole in his diaphragm). He is on an ECMO machine that is taking the place of his heart and lung function until his pulmonary pressure is at an acceptable level. Rachel and Matthew are doing well under the circumstances, but it is a very stressful time. Rachel's sister, Naomi (who just had twins in April) has a website for baby Judah: http://babyhomepages.net/judah. Your prayers are greatly appreciated! I've been in Portland since the 26th, and I am home for the weekend, heading back on Monday, so I've been somewhat out of touch. Check the website for updates. If you want to see the twins go to: http://babyhomepages.net/artoff. Thanks again for your prayers!

God Bless! ~Karen Hinderer Ellis~
Healing Wings ~ www.GlycoPlace.com ”

Pray for pulmonary hypertension to be resolved so that Judah can be taken off of ECMO and given surgery. Time is very important. If the doctors don’t see any improvement in Judah’s condition they will not put him on a third ECMO machine. Karen said that there have only been two babies in Judah’s condition that have been given ECMO a third time and both of them were showing improvement. The machines can last up to seven days and he was put on the second one last Thursday. (I’m just sending this email to those folks who requested updates on Silas. I know what Karen and her kids are going through with little Judah. Please forgive me if you don’t want to receive anymore and let me know. It is hard to think of who might be interested in praying.)

July 6,2006 - More prayer Needed!

Judah is being placed on a new ECMO machine as I write this (Thru. 10:15am). The machines can last for up to seven to ten days. He has been on the first ECMO machine for five days. Switching out machines *always* means a set back for the infant. Please pray that everything will go smoothly and that there will be no complications. Pray also for Rachel who is feeling like she is getting sick. The Southmayd family is having a hard time keeping someone by Judah's side for extended periods because of this and because they still need to care for big brother Asher who's almost two. Pray God would make it possible to be by Judah's side since his parents pressence is vital to his recovery. I was witness to so many children in the NICU and the ones who did the best were the ones who had their family by their side constantly.

Thank you for taking time to pray for this little guy and his precious family. I've placed Judah's website link to the right.

Love, Tanaya

July 2, 2006 - Back home again.

Silas had a rough ride home from Portland yesterday. He is a homebody who doesn’t travel well. He is so glad to be home and not in the vehicle anymore. He has an appointment with Dr. Williams Monday to recheck his weight. The doctors and nurses at Legacy NICU didn’t seem too concerned about it saying things like, “Don’t worry. It’ll come.” Those were comforting words to hear. I am trying to feed Silas every hour to hour and a half during the day. Hopefully his weight will be up another three ounces by the time he gets weighed.

It has been an idyllic day here in Lake Creek. Today I was thinking about how blessed we are to live in a place with such exquisite beauty. When I turn my eyes in any direction a beautiful panorama of summertime colors dances in the wind. As I was lying on the hammock with Silas snuggled next to me, I listened to the playful banter of the three older kids in the pool. Micah would say, “Marco,” while Savannah called back, “Polo,” and Jerusha ran around the deck crying, “MARCO POLO! MARCO POLO!” over and over before plunging in. The only thing not perfect about today is all our friends whose babies are still so sick and especially the families who’ve said goodbye to their dear children. While I treasure the time God has granted me with my children, I get flashes of overwhelming sadness when I think of all those families.
























I rejoice that Dustin and Amanda are taking home their not so little Aunna soon. I was thrilled when Amanda asked if I’d like to hold her. She still needs one more surgery to remove a small, plastic reservoir placed in her head to collect the fluids that built up so as not to put pressure on her brain. The doctors had talked about placing a shunt (tube) in her body to drain the brain fluid into her stomach before she went home. Right before we left Portland, Amanda told me that the surgeon thinks the reservoir can be removed without placing a shunt because her body is doing such a good job of reabsorbing the fluid.

This amazing little girl, who had only 24 weeks growing in the safety of her mommy’s womb, is now astounding the staff in the NICU with how well she is doing. (Do you think it has something to do with our prayers?)

Trina is another gal I met in the NICU. Her son, DJ, seen here before leaving the NICU, was born prematurely a week before Aunna was born. DJ was discharged about a week before Silas but was readmitted the next day. He had trouble swallowing and when he’d choke his throat would close, he wouldn’t get air and his heart rate would plummet. When he had a serious episode at home, an ambulance was called to bring him back to the hospital and another to bring Trina’s mom who they thought was having a heart attack. Luckily it was just an anxiety attack and she is fine. DJ has been home for a few weeks now and he is doing wonderfully too. He and Trina came to see us at the Ronald McDonald House and our boys got to “chat” with each other.
Becky’s Joshua had lost seven ounces after he was placed on lasix. This was a good thing since he weighed 18 pounds 9 ounces and he is only five months old. He will be having the end of his G-tube (a tube surgically inserted through the abdomen into the stomach to allow direct feedings) removed and it will be replaced with a button. After eight weeks Joshua will finally be able to lie on his tummy.
Developmentally, Joshua is right on track, but physically he is behind. (I wonder why?!?!) He has trouble holding his head up due to lack of tummy time (and I am sure in part due to those enormous, adorable cheeks). His abdomen is distended because of his enlarged organs (caused from the liquid gold—nutrients being delivered intravenously) and he will most likely need a liver transplant. But he is a sweet patient and content baby. It will be wonderful for Becky and Joshua when they can finally go home.

I had the pleasure of meeting Becky’s mom, Linda, and of seeing the room they’ve set up and painted for Joshua. Joshua’s stuff is adorable and the room is soothing. It is a room that will bring healing to both body and spirit.

We stopped at Becky’s to take some of her milk home with us. There is a lady here in the Valley that has twins, a boy and a girl, and cannot get her body to produce enough milk for them. Both babies have had bad reactions to formula, especially the little girl. She would throw up so violently that it would come out of her mouth and nose and block her breathing. Mom had to sit by her bed with a suction bulb to remove the formula from her airway. The situation has caused awful problems, and the parents have been buying pasteurized breast milk from a milk bank in Texas for $1,000 per week. I gave her my milk that Silas hadn’t been able to eat, and Becky has donated hers. If anyone else has milk saved up, this lady and her twins would benefit greatly from it. Just contact me and I’ll get you in touch with her.

When Albert and I were walking out the door of the Ronald McDonald House, a lady started a conversation with me. It turns out that she and her husband were one of the couples who had toured the NICU when Silas was on ECMO. Her name is Shanda and she is here from Alaska to deliver her baby at Legacy. Her son has CDH just like Joshua, Nanette, Jolee, and Judah all had. She is due on July 13th. I would ask that you join me in praying that God will have mercy on their little family. Pray that their child does so well that he doesn’t need ECMO.

I haven’t had a chance to talk with Judah’s family today (they are understandably preoccupied) but I did get a message from his grandma, Karen (pictured here with Judah's big brother, Asher), saying that they’ve started him on lasix to try and reduce some of the swelling ECMO causes. She also said that his heart had not been working well but now seemed to be doing better. The doctors are not doing much to open up his lungs just yet so that they don’t interrupt this cardiac improvement. Other than that, Judah seems to still be stabilized on the machine. We wait. We pray. We cry. We trust Judah is resting in the Lord’s arms during this time that he cannot rest in his mother’s.
May God’s strength, mercy and comfort fill Matt, Rachel and Grandma Karen as they wait on the Lord for Judah’s miracle.

Lot’s of weighty requests from hearts full of hope. Thank you to everyone who continues to pray for these precious little people.

Love, Tanaya

July 1, 2006 - Emergency Prayers!

Emergency prayer requests for Judah, Matt and Rachel's son who has CDH. He was placed on ECMO today and seems, so far, to be stablized by the machine.

1.) Pray for the machine to remain blood clot free.

2.) Pray that he does not bleed internally due to the blood thinners he is on, which keep the ECMO machine running smoothly.

3.) Pray that Judah's pulmonary hypertension (high pressure around the lungs which keeps blood from being able to access them) will be resolved quickly and without incident.

4.) Pray for Matt and Rachel to have strength and courage during this trial.

5.) Pray most feverently that the God of all creation will grant the Southmayd family a miracle and their son would become a testement to His awesome power.

Love, Tanaya