Aili Rae: More on coming home

We had our first check up on Tuesday the 6th. That went good. Aili had been spitting up and kinda gagging. The doctor thought it might have been her reflux so we up'd that medicine and she has been fine since. Then we had another check up on the 13th. She had lost weight which wasn't a huge deal, but she should be gaining. To try and fix that we up'd her nighttime feeds from 15 ml an hour for 8 hours to 20 ml. At that appt. we also tried giving her a bottle with a preemie nipple of just water. She did really well so Dr. Puntel said to do that a few times a day for a few days, then formula a couple times a day for a few days too, then we could try at each feeding. So we did the water a few times, but she would get SO mad when we would take it away. Since we couldn't just let her have water for a feed, we decided to just try the formula. She did great and so we just went straight to letting her try at each feed. Some feeds she would eat only 10 ml from the bottle and the rest through her tube, but some she would down the whole bottle, which is at least 45 ml but sometimes we would give up to 60 ml.

45 ml = 1.5 ounces

60 ml = 2 ounces

We had another appt. on the 20th and she didn't gain any weight, she stayed about the same. She is 2.95 kilos right now, which is 6 lbs 9 ozs. I'm amazed that she is almost 2 months old (on the 25th) and she still weighs less that Taryn did at birth (7 lbs. 6 ozs.). Anyways, since she still didn't gain any weight we up'd her night feed to 25 ml. Clay and I thought that maybe she isn't gaining because the formula she is on only has certain fats, because the ones in regular formula and in breast milk made her have fluid build up in her chest. So we asked if we could start giving her some breast milk again. He said that we could start with 2 feeds during the day and we will check tomorrow, which is Friday, to make sure that fluid isn't building up. She should be fine though, since it has been 4 weeks since we started the formula, so her chylothorax should have

cleared up (http://en.wikipedia.org/wiki/Chylothorax).

We also have brought her to a Speech Therapist twice since we have been home. We go to her for feeding. She said Aili was doing a great job, but she sounded like she was swallowing a little late, which could cause her to aspirate. So we tried a thickener for her food. That seemed to help for a little while, but after a few days she sounded the same. She makes a gulping noise when she does this. I guess by swallowing late the formula kinda pools in the back of her throat, if it's just pooled back there then she could breath it in. So we go in today for a swallow study. For this they give her different consistencies of fluid (regular, nectar thick, & honey thick) to see how she is swallowing and what would be best for her. I think they actually video tape it somehow. After they are done with the study we will get to see the video too.

Well here are some pictures....

First time being held after her surgery. She hadn't been held in almost 3 weeks!!

In her wedge for her reflux. She sleeps in this. Also the blue straps are what I was talking about in an earlier post. She had manage to pull the top one up in over her face, which made her monitor alarm!