Dear Friends and Family,
I know many of you have been waiting to hear what the results were of all the doctors gathering Wednesday morning to discuss Julia’s case.
All four surgeons as well as cardiologists and other doctors agree that now is not the time for Julia to have her heart surgery. They do not believe that the hole in her heart is causing any of her heart issues. And they really want her to get stronger and grow bigger before they put so much stress on her little body. Right now, recovery could be very difficult for her. At this point, she seems to be doing “better” with all the various medications she is taking. She is not on any pain medications because she is not in any pain. That is comforting. They are working on “weaning” her off air flow and IV meds (and switching to oral meds) so that eventually she can come home. They have to find the right “cocktail” that works for her.
However, the doctors still don’t completely know why her heart is enlarged- especially the left side. They agree that it is probably a completely separate issue from the hole in her heart and the fact that she has Down syndrome. They have a few theories and only time will confirm or eliminate each theory. The theories range in severity and one in particular is quite bleak. They will most likely know with much more certainty what it is in the next few weeks. Meanwhile they will continue to X-ray her lungs, do regular echocardiograms, and monitor her. So the plan at this point is to just wait and see. (Torture.)
Meanwhile, on a happy note, Julia continues to charm all the staff at LPCH. She has very alert times and seems to be very social. She looks people right in the eyes and in the face. She turns to look to anyone who comes near by. Every one comments about how cute and beautiful she is (and I agree!) Several have also mentioned how she seems to be so close to smiling and that she smiles with her eyes. (It may be hard for her to smile because she has so much tape on her face holding the tubes in her nose! Grr!) She is SO expressive! She makes all kinds of expressions with her face. She is wiggly. (She has been wiggly ever since I first felt her at 15 weeks pregnant!) She had difficulty keeping her CPAP (the little prongs that stick in her nose that blow air) in because she is constantly moving her head around. (I think it really bugs her… it would bug me, too!) She is generally mellow and does not cry too much. (But watch out, she can get mad! Just try to suction her nose! She’ll let you know that she doesn’t like that too much!) She is a beautiful life and every day she is in our lives she is a gift. We can not take that for granted.
So how can you pray?
• That the cause of her enlarged heart is not the “worst case” scenario.
• For healing.
• That God would be preparing us for whatever lies ahead. We know that God CAN heal Julia, but we also know that He may not.
• That we would trust God with her life and our lives. That we would remember that He is faithful to walk along side us no matter what lies ahead- no matter how scary.
• That Julia would get strong enough and well enough to come home. We miss her.
• That we can balance being at the hospital and time with Mattie
• That God would give us (especially me!) supernatural patience in parenting Mattie when life is stressful and we (especially me) don’t have much “reserve” for dealing with her when she is challenging.
• That Bob and I would be able to carve out time to spend together (and that we would keep that a priority.)
• That Bob and I would also get time to be alone and “get away.” (Bob especially needs this.)
• That Mattie would be able to “kick” the last bit of her cold so she can go up to visit Julia. She has this cough that won’t go away!
• For Julia to really be able to smile- it would fill my heart with joy!
Praise:
• That Julia is stable right now.
• For our friends who have been so supportive with meals and childcare and prayers and words of encouragement. It is helpful just to know so many people are praying!
• That Julia is getting care from the top doctors in the country and even the world.
• That no matter what is down the road, God, our family, and our friends are going to get us “through.” It is going to be a hard road ahead no matter the outcome. But I believe we will ultimately be okay.
Thank you all so much. Please never hesitate to reach out to us. If we don’t get back to you right away (or at all), it is not because we did not want your email or your call. I especially appreciate getting notes/emails/texts of people just letting me know they are praying or thinking of us. Thank you for walking this hard journey with us.
We love you all,
Valerie, Bob, Mattie, and little Julia
No comments:
Post a Comment