Jimmie weighed 10 lbs 6 oz at his appointment today with Dr. S. Nothing new was really discussed. Dr. S. will not prescribe Reglan . . . he doesn't feel comfortable with it. He also won't advise Rachael to up Jimmie's dose of Prevacid. He did advise Rachael to keep her appointments with the Neo and the Gastroenterologist. Dr. S. feels the more specialists on board the better.
Rachael is losing hope that anybody will really be able to fix this. That one great feed last night was just that- "one" great feed. He hasn't eaten by mouth since and has been uncomfortable with all of his feeds today.
What everybody has said is that this kind of thing usually resolves itself within the first year. I asked Rachael if that meant a year from birth or Jimmie's developmental 1st year. Rach said she's assuming developmental. She says that's how everybody talks and operates with micro-preemies. While the fact that this usually resolves itself is comforting to us. The amount of time left that we could possibly be struggling with this is overwhelming.
Today is Jimmie's 3 month developmental birthday. His due date was May 28th. He'll be 7 months old (from birth) in two weeks, but is really only 3 months old developmentally.
Remember when I wrote this back in January?
"I was up early this morning praying and God brought the story of “Hinds Feet On High Places by Hannah Hurnard- to my mind. Rachael and I wrote and choreographed a ballet based on that book which our students performed beautifully a couple years ago. I realized that Rachael and those of us who are very close to her are Much Afraid and her companions are “Sorrow” and “Suffering” and that she is standing at the Precipice Injury and that Craven Fear keeps attacking her. The precipice seems absolutely impossible to climb, but in the story Much Afraid calls out to the Shepherd and he brings a cordial for Much Afraid to drink called the “Spirit of Grace and Comfort” . . . She drinks it and Sorrow and Suffering tie their bodies to hers with ropes and help her up the Precipice. When she slips they catch her and when she needs to-- she drinks the cordial of Grace and Comfort. In the end of the story Much Afraid makes it to the High Places and the Shepherd gives her a new name “Grace and Glory” and her companions- “Sorrow” and Suffering” have new names- “Joy” and “Peace”.
Back then I said our Precipice Injury was the 3 weeks to viability. We made it to the top of that precipice and Jimmie is here today- alive and beautiful, an amazing miracle.
We have a new precipice. This precipice could take months to climb.
Rachael is sad and discouraged and totally exhausted. She's sad she can't take care of him in a normal way like a normal mom. She is sad other people have to hold and take care of her son so she can sleep, she's sad he's in pain a lot of the time. She's sad she and Justin can't function without help, she's sad they can't live in their own home. She fears for Jimmie's future and his well being.
Please pray that Rachael can receive that cordial of "grace and comfort" that our Shepherd is offering. Pray that we can climb this precipice and that Joy and Peace will take the place of Sorrow and Suffering as our new companions.
We love you Lord, and we thank you for Jimmie. We ask you to heal his body and help him to eat normally. We ask for grace for Rachael, Justin and those of us close to them during this time. Guide us in Jimmie's care.
Thank you for supporting us with your love and prayers.