September 27 (Day 12)

Today we hung out at home for the majority of the morning.  Coco and Sara went to the hospital this morning to visit Julia and for Coco to see her before they headed back to Iowa.   Since we were up there for her 11:00 feeding, Sara tried to nurse Julia.  Unfortunately, Julia was very tired and really had no interest in
eating.  She only took 4 ml.

After getting home, we all had lunch together.  Then Coco and Kelli headed to Iowa with the boys.  I think the boys are looking forward to spending some time in Iowa.  They happily went into the van and started watching Dora.  Sara talked to Oliver a bit tonight and although he sounded a little sad, he seemed to be doing pretty well.  Coco said Parker was making faces at her while we were talking so I'm pretty sure he was doing all right.

Eric and Sara headed to the hospital shortly after they all left.  We were to meet with the speech pathologist during Julia's 2:00 feeding.  Unfortunately, the speech pathologist we had been meeting with was sick today, but another one came up.  We talked about Julia's feeding guidelines for right now.  We feel like we are at a standstill with her feedings.  The speech pathologist said that she thinks Julia's mouth muscles need to get stronger and she needs more practice to get better at eating.  However, they are still limiting her to 1-2 bottles a day with one at night.  I am able to nurse her anytime I am up there so we went back for her 8:00 feeding tonight to try again (she only ate 5 ml).  We are trusting that the doctors and speech pathologists know what they are doing right now, but it seems very counter intuitive to us to limit her feedings when she needs practice.  I will say she does just get exhausted from eating.  Today when we tried giving her a bottle for her 2:00 feeding, she really seemed like she was doing well eating and we were getting excited that she was going to eat a lot and then when we checked her progress, she had only eaten 3 ml.  So needless to say, we are frustrated that she is not eating as well as necessary for her to go home, but we know we are on her time to learn to eat properly and well.  We did hear from her night nurse that she is showing signs of being hungry at night, especially at her assessment times.  We are hoping that the next step in her feeding guidelines may be to feed her at night if she is showing signs of being hungry.  Julia did have a long awake period after her 2:00 PM feeding.  She was very alert and fun to watch and play with. :)
(*disclaimer- she is being fed at night through her feeding tube so she isn't going hungry, she just isn't given a chance to try eating from a bottle first)

After her 5:00 PM feeding (where she at 13  ml), Eric and I headed out and grabbed dinner together.  When we finished up dinner, we headed back up to the hospital for Julia's 8:00 PM feeding.  She was pretty sleepy and only at 5 ml.  We may try going up for a middle of the night feeding tomorrow night since previously she had been doing better eating at night to see if that trend could possibly continue for us.  Now we are at home in a very quiet house.  It is strange to not have the boys here, but I'm sure they will have a great time in Iowa.

Here are a few pictures of Julia.

Julia cuddling with Daddy while getting a tube feed.

Julia all tucked in for the night after her 8:00 feeding.

Julia's NICU setup.  There are a few shelves off to the left of the picture where we are able to leave her boppy pillow and set our things when we go up to visit her.