Ava is doing well. She is almost done with her course of antibiotics for this UTI. Cardiology cleared her fluid restriction enough that she can have higher volumes of food. now..so she should start growing again. Right now she is only 10 pounds. Currently she is still on the lasix to dehydrate her a little, but she is so dependent on it to urinate that I am not sure how we'll wake up her system to urinate without the drug. Everything she is taking is being weaned- verrrry slowly. The heart surgery incision looks good as does the IV infiltration "burn" on her left forearm-which will leave an ugly unnecessary scar. Her anatomy is such that we will have to be hyper-vigilant to watch for signs of UTI infection at home.. They said that our pediatrician will know us well and possibly the ER.
Swallow study is this Tuesday. We will see if Ava can protect her airway when swallowing and the thickness of feeds which will be safest for her to start learning how to eat.
Esophagram and G-tube surgery are scheduled for the end of the month. Of course there are a million complications that can accompany a surgery, but if all goes well we could go home by the second week in October I think.
We were told that Ava's cloaca reconstruction will be done at about 1 yr of age.
We're coming along. We can just barely see the light at the end of the tunnel
Yay for lights at the end of the tunnel!! Lasix...we took our daughter home on diuretics and weaned them after quite a while. It takes time cuz their bodies get hooked on them to function.
ReplyDeleteOn leaving...in our experience they start throwing out dates for when you might possibly go home, but try not to get to attached to them. They might say "next week" but then want to keep her another week after that. It's soooo hard! Try to patient! I imagine they will try to get her off the lasix so that you don't have to keep taking her in for labs all the time. That's what they did with us. And I'm glad we did it although it was painful at the time.
Good luck, and go Ava!
We've had so many setbacks that we haven't even heard rumors of a go home date. I made up the one about October. I'm not attached to it at all. They are so cautious- they don't even speculate or guess. I did ask about going home on Lasix. they told me about checking the labs and things...and I had a hard time fathoming getting both sets of twins to the pediatrician's office. I would have to schedule all appointments around possible childcare availability, especially since my husband works an hour from home. I always love your comments. thanks.
DeleteI am happy to hear that there is a light at the end of this tunnel for you and your little Ava. I pray that all goes well, and you can avoid any more setbacks. You and your family are in our family's prayers...my boys have never met you, but every night they pray for baby Ava:)
ReplyDeleteThank you! They will meet some day. Do you come East for Thanksgiving?
Deletethis post is from me, Amber, Not Shaun...the blog was set up by him so I guess it uses his profile for default.
DeleteWe will probably come that way sometime in early December:) We would love to see your sweet family. Maybe we can make it work:)
ReplyDelete