My apologies for the long delay between updates on here. All has progressed better than the doctors expected since Wednesday night. All of the prayers, messages, and shares have reached us and helped us work through the chaos and emotions of this time. She’s doing fantastic and has had sets of visitors since yesterday afternoon. I’m sharing the three updates my wife messaged out to people, with the first being what was sent last night and progressing up to the one sent out tonight. I will do my best to provide another update tomorrow if there appears to be an interest in keeping tabs on her well-being.
Thank you all, and God bless!
-David, Nicole, Archer, and Elowen Wiley
Elowen got her procedure to drain the kidneys today around 1:30. It took about 2 hours. She was sedated before, during and still sedated now, resting and the sedation is going to slowly work its way out of her system. Though they don’t want her very awake anyway so that she rests.
It is hard seeing her not moving much. Haven’t gotten to see her eyes open, David has though. Going from feeling her move in my belly to barely being able to touch her is rough at times.
With the kidneys draining her belly is beginning to deflate and is looking so much better! Love that, that pressure is going down. It will hopefully give her more room to breath on her own as well.
They will reevaluate the kidneys tomorrow with ultrasound and also look at the blockage they think are in her ureters.
I am recovering well. Walking on my own, though on pain medication. I was pretty emotional this morning but a nap helped.
My milk production isn’t as strong as it was but it will hopefully go back up soon. They still are not feeding her yet, just an iv, so i’m not too concerned about not having milk for her.
She is doing really well, better than they expected.
Please continue your prayers! Still have a long road.
Thank you all so much for your support!!
They are happy with how well her kidneys have drained. They are still unsure on if the kidneys have been damaged but she has made some urine production since the drain. They think about 80-100 ml of urine made since drain.
They plan on doing another ultrasound today to look at them more now that the swelling is down and to look at the possible blocks as well.
If you remember she was 13 pounds at birth due to the amount of fluid in her kidneys, she is now weighing 9.8 pounds after drain! That is a much better newborn weight that will be going down in my records! She is a chunky little thing!
There next course of action is to have surgery sometime this weekend or monday to place a PD catheter in her belly. This is for dialysis if she should need it later on incase the kidneys are not healthy. They want to get it in and have it healed before it comes to her needing dialysis. She may end up not needing it at all but even if she does this is the type of dialysis that she can eventually come home on.
They are going to start giving her my breast milk slowly through the ivs in her belly button to let her gut get use to it. Only about 3 teaspoons a day but so happy she will begin to get it. All of her nourishment will still be through her iv though.
Her lungs are doing well enough that they will be weaning her off the ventilator slowly this weekend.
They are also going to be weaning her off the morphine so she will hopefully be more alert and less sleepy soon.
The genetics team wanted to wait till swelling goes down before they assess if she has dwarfism. They will take more precise measurements soon and possibly run blood work but she is so much more proportional now that her stomach is down that we are hopeful she will have a normal skeletal system.
There is still a lot going on but she is strong and she is surprising the doctors alot! God is healing her with their help!Thank you so much for your continued prayers!
Her surgery is scheduled 8am tomorrow. Should take about 2 hours. Everything should go smoothly. There is always risks but they don’t seem worried. Prayers are always good and appreciated. We will have a update on surgery and her plan of the day by noonish tomorrow.