July 9 pm

Everett had his swallow study at 2 PM today. I was able to go and watch myself. It was pretty neat to see him swallowing and watch the liquid go down. I could tell right away, for the most part, that his formula was going to the right place.

When he ate the breastmilk, with a level one nipple, he aspirated. She showed me afterwards how she noticed it, it was past his vocal chords. Not horrible, I believe she would've called it micro aspirating. But it was enough to cause problems. We had him using a level one nipple when we let him eat on his own without the tube, which tells us why he ended up unsuccessful. He was aspirating the entire time. That explains the congestion in his nose and why he refused to eat.  The nursing staff and speech pathologist are highly impressed with how he refuses to do something when he knows it is wrong for his body. This is not the first time. My smart little boy. Aunt Kristin also noticed his struggles with the level one and recommended we go to the premie nipple when she was in with me on Wednesday. Smart auntie!

The great news is, he doesn't aspirate while drinking breastmilk if he uses a premie nipple. He did not aspirate any of the formula either. So at this point I am going to feed him formula, since it's more comfortable for him to drink, in hopes we can avoid the G-tube and get out of here in a reasonable amount of time. Once we get home we can practice more with breast milk, it just takes him a little longer to eat.

He drank his last three meals on his own, his 8 o'clock was a toughie, aunt Kristin was here and didn't give up. He is pooped out. It is 10:20 right now and he needs to eat again at 11, and I just got him back to sleep. I'm pretty sure I won't be able to wake him up for the 11 o'clock feed. Time will tell. We also know from experience that he likes to sleep through the night, which is great when he comes home, but not what we need to get out of here. So unfair! 

Another predicament I am in is he is supposed to have another G.I. study tomorrow in preparation for his G-tube placement on Monday. I need to decide if we think he needs the G-tube by tomorrow morning so they can do the study. If I think he will be successful feeding on his own, I can call it all off. The problem is I have tonight to base that decision on and night feeding is difficult. I don't want to expose him to the extra radiation if he doesn't need to be.  He has had a lot of x-rays in the first month and a half of his life. The reason they need to do this study is to make sure that his digestive track is appropriate, even though he has made it very clear that it is. It is routine procedure for trisomy 21 babies. :/ it's not quite fair, we know he doesn't need it. If I put it off and wait until Monday, he probably would not get in for the G-tube until Friday of next week. So that means if he does need the G-tube on Monday, I will have extended our stay even longer. Ugh!!!! :( decisions, decisions.

The great news is we ended our day knowing that he can drink breastmilk, and formula. We will need to do another swallow study in a few months to see if he is able to drink from a level one nipple instead. Until we do that it is not safe for him to use anything else since we will not know if he is aspirating. 

Andre woke up with a fever and chills last night, and came home from work today early. I think he has done that maybe three times since I have known him. I am hoping it does not get passed around the house, I don't know what I would do if I got it and could not be here. I really hope he is better by the weekend, since Kristin has to leave on Sunday morning. 

Keep your fingers crossed that Everett has got what it takes to eat on his own. I am going to try to see if we can put the G.I. study off until the afternoon tomorrow just in case the night does not go well, so we can see how he does during the day. Hopefully that will give me enough time to feel confident in the decision that needs to be made.

This is Ashley, our amazing nurse that we love! We are on our way to radiology for the swallow study. This is my first "stroll" with Everett. I can't wait to take him outside so he can get some fresh air and a touch of vitamin D. She wanted to take classes, I told her how pretty she looks in them!

Where you taking me mommy?

Of course he pooped right before, this boy likes to inconvenience meals and plans with pooping. And he does not like messy britches, so we were sure to clean him up before the study began.

Kristin came to relieve me for a few hours this evening so I could see Clara for a little bit before bedtime. I get home to see this.

I am pretty sure these are Kristin's socks, she made Andre put on her. She is wearing one glove. Andre said at one point she wanted five gloves on one hand. He somehow talked her out of that.

Smile!

I love my babies!!