May 10, 2006

Silas is doing well health wise. He is still getting his nourishment from a tube into his stomach through his nose. Tanaya’s milk is being dripped in over a period of two hours and he has the third hour to get a little hungry. There is still no sign of any lingering infection. The 28th was the last blood culture that grew colonies. As long as he doesn’t get morphine he doesn’t have to deal with more drug withdrawals. PTL! His vomiting has decreased quite a bit, especially since they stopped lacing his milk with formula. They had added the formula because they wanted him to get more calories than Tanaya’s milk provided.

Silas will need a lot of physical therapy to get his atrophied muscles to function normally. He lay for three weeks in the same position and now his muscles won’t work right. Yesterday Tanaya was taught how to wrap him and hold him—she is never allowed to carry him on her hip. The therapist will start working on his little body today.

Getting him to nurse is the biggest hurdle right now. After babies get through ECMO, parents get excited because the baby will latch onto a passy and they think that nursing will be the next step. Not so. There are added steps to nursing that these babies find it difficult to conquer. Tanaya is finding that out with Silas. He will latch on to suck (with a shield) but he doesn’t like getting anything (meaning the milk) in his mouth, so when the milk pours in he lets go and makes faces. He will only suck about 12 to 15 times at one feeding. He spits the milk out and looks at his mommy with a look that says, “My passy is leaking!” Here is something big to pray about. Tanaya has been warned by nurses and the hospital’s lactating consultants that insurance companies won’t pay to have babies stay in the hospital just because they won’t eat. They make the doctors put a permanent feeding tube into their bellies and send them home. Please pray that this doesn’t happen to our little Silas.

Silas is never more content than when sleeping in Tanaya’s arms. Twice she has gone away and left him during feeding times at the encouragement of the nurses. They have promised to call her if he is fussy before they give him morphine. Both times they didn’t call and they gave him morphine. One time Tanaya just went into a different room to pump, not out of the hospital, and the stuff was administered for the second time in one night. Now Silas has gone for three days without morphine because Tanaya has been there to console him and settle him down. That means he has gone for three days without any withdrawal symptoms. He just wants his mommy. He has definite fussy times but Tanaya has been trying to figure them out and he always settles down for her.

Tanaya is extremely exhausted. She has an infant that she needs to nurse and she doesn’t live with him. Last night she was able to spend the whole night in the nursing room with him, but his nurse popped in every hour or less. She finds when she does go back to Ronald McDonald House there is only time to do one thing besides pump. She can eat, have a shower, wash a load clothes, or have a nap and that is all.

Nanette is almost up to full feeds through the NG tube (nasal gastric-I think) and in the next day or two they will try to pull the IV lines which are in her jugular like Silas’ were. Her parents are getting to hold her, Joe for the first time ever. Every other time she was hold-able he was back home. They will hopefully get to feed her Mommy’s milk in bottles soon. Her infection seems to be gone and the antibiotics are almost done. They still haven’t figured out what caused that last infection.

Aunna is stable. She has gained ten ounces in one week (almost a third of her weight). She is still the tiniest baby in the NICU.

Becky’s Joshua is getting the tube into his tummy by the end of the week. She will have to take him home with it. She is giving Tanaya all his too small clothes that he was never able to wear. Also all of his pull-over the head shirts because the broviac IV won’t permit him to wear them. Becky has the most wonderful attitude and sweetest demeaner, Tanaya says.

Sorry for the delay in this email. Tanaya has been overwhelmed and exhausted and so have I! Today I rushed Jerusha into Immediate Care in White City so that I could pay $230.00 for them to tease a tic that had planted itself in her neck. I didn’t know how to get the silly thing out, and I didn’t know if it was the lime disease kind of little monster. All the doctor did was tickle the tic’s backside until she (it was a female tic of all things) popped her head out. Jerusha insisted on taking “Cinderelly,” (her favorite Disney movie and, consequently, her name for her little friend) home in a bottle. She had a meltdown in the car when I told her we should to kill it. Obviously the two had bonded so I left its bottle/house on the dash when we went into Wal Mart for an hour (it was an A/C Max day today). Now she is hoping that it isn’t really dead, just sleeping, and it will be there to greet her in the morning. Aren’t Grandmothers cruel?

I have to tell you a little story about Jerusha and her unique, four-year-old sense of humor. I was vacuuming our room at Ronald McDonald House and I kept on vacuuming as I moved out into the hallway because it obviously needed it. Down the hallway I went and on into the foyer/reception area. I was on a roll. Jerusha just happened to walk in from the play yard through the hallway to our room. She glanced up and saw me and without saying anything she smiled and started singing, “Cinderelly, Cinderelly, they always keep her hoppin’!”

Lisa is feeling much better. She’s invited us for supper on Sunday, but Shahala is in lots of pain with her broken/dislocated tailbone. The kids and I spent Monday with her. (I continually get into trouble for not getting the kids to bed on time. It was 9:30 before we even got home!) As she gingerly takes little steps it pops repeatedly. She is bored but not in pain when she’s lying down. Please pray for her healing.

God bless all of you faithful prayer warriors. We love you!

Jeannie