When I say today was a bad day, I sit back and think "No, it really wasn't, we have been through 100x worse" Yet, I can't seem to change my mood.Today Ailyn had an appointment with her developmental pediatrician. I will start by saying I LOVE the doctor. Having to go to so many doctors and have them evaluate Ailyn in every possible way is tough to hear all the time. Even though Ailyn in our eyes, will always be perfect.... we realize that it's not always going to be that way with her doctors. They are going to point out every bad point....and not because they want to stress me out....because they care about Ailyn.
Todays appointment was just that. Ailyn passed most her her "tests" that she did with her, like putting a toy in a bucket or moving a blanket to get to the toy she wanted. She would not color (we have been working on this) or say a word on demand.
The doctor said Ailyn's cognitive age is at 12 months (she is 19 months actual, 16 adjusted) She is on a 9 month level for speech. She is progressing at each appointment by 75%. She said Ailyn is extra active and this is "normal" in micropreemies. She said Ailyn will be walking soon and will not walk....but run.
The PT came in and worked with her. She was happy with Ailyn. She did notice some high tone in her right foot and told me how to massage her to help. She also agrees she will be walking within 4-6 months.
The bad news.... Ailyn has always been on this doctors preemie growth chart at 5%. Ailyn has fallen off that chart now in all areas (weight, height and head).
We said when Ailyn fell off the growth chart and was developmentally behind then we would reconsider the feeding tube. So it looks like we will be doing the Gtube asap. Aaron and I feel strongly against the feeding tube BUT both know it's the best choice for Ailyn at this point.
So I called her doctor today and expect a call tomorrow to talk about surgery. Ailyn can be fed by the tube all night and eat normal during the day.
The day was hard because I feel like I have failed as a mother. I know that is not true but I can't help thinking the thought. I have tried everything to get Ailyn to put weight on. Feeding her during the day is not easy. Every day is different. There is no tricking her. She has jaws of steel and will hold her mouth shut. On a good day I can feed her yogurt, stage 2 veggies, applesauce.....on a bad day she will suck on cheese curls and that will be her meal. So basically I am breaking down, asking for help.....help I can not give Ailyn.
** Our preemie friend, Callie is having eye surgery tomorrow, please say an extra prayer for her! Thank you! **
