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