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