RSV shot....check Gtube....check :( We were hoping Ailyn would make the 12 pound mark at today's appointment. Not close. 11 pounds 12 ounces Aaron and I had agreed that if Ailyn wasn't gaining weight well we would agree to it. We thought for sure she was over 12 pounds! To see that she wasn't was so upsetting. I work so hard everyday, all day, all night to feed her. So her not gaining weight makes me feel like I am doing something wrong. The pediatrician reassured me this wasn't true. Since Ailyn is now rolling she is burning more calories. So she is taking 1 hour to eat 3 ounces, eating all day long, and active.
I really appreciate all your opinions and advice. It has made this decision much easier for us. Many of you have asked why we don't use an appetite stimulant. Ailyn's problem isn't a lack of hunger. She is having problems with sucking and swallowing. If she eats a bottle in 10 minutes, then she wants more. She has a lot of trouble sucking for some reason. She takes 24-26 ounces a day, which is normal but since she takes in an ounce an hour (some days she will do this), it's working against her. So it's not that she isn't hungry. We (and the doctors) believe it's more a coordination issue. I kinda wish it was a hunger issue, much easier to fix :(Aaron and I have sat online for hours looking up information about Gtubes and other feeding tubes. I have joined a group for parents that have children on feeding tubes. We have been able to collect a ton of information and advice. We wanted to make sure we did everything we could before doing something so invasive. We are well aware (and scared) of all the complications that can come with a Gtube. But, all the parents we "talked" with agree that it was the best choice they made for their child despite all the bad stuff that comes along with it.
Ailyn will continue to have OT once a week. I have ordered a few "toys" to help stimulate her mouth muscles. Our OT is great so I am confident she will find great ways to help Ailyn.The surgery will be in the next 3 weeks. The pediatrician, GI and eye doctor are trying to coordinate a MRI at the same time. Her eye doctor "strongly" agrees she needs a MRI to rule out anything neurological. I will keep you updated!
Thank you again for all your help and support. We are very lucky to have all of you here for us.
