Day 28, Friday

  Still not exactly sure why there is milk coming in the stomach and up the tube, but Lyla has been pretty good about it. Today she seemed to be breathing much faster than usual and her O2 stats have been low in the high 70s. Nurse Shelly was doing a "blow by" with the oxygen mask, just lesving it near Lyla's face to help get the stat up. I am starting to feel like we are taking small steps backward now. She hasn't had any outburst fits, so that is relieving at least.

  Trevor and I have been practicing things that we will have to do at home and one of them is the lovanox shot... I really have no interest in doing this and even had the nurses change the time they do it to 6am so that Trevor would have to do it every time. But I still need to learn it and feel comfortable so tonight I did it... I stuck a needle into my (sleeping) baby! It was honestly not as bad as I thought, but I still really do not want to do this! I think Lyla has a couple of weeks left on these shots before they do another check on the blood clots.

Upped feeds to 27ml an hour, with two hours off in the day.

Day 27

(This is how I found her when I walked in)

Yesterday (Wednesday) there was a white-ish liquid backed up in Lyla's tube. Usually it's meds or mucus so we thought it might mean milk, which would mean the ND tube was not where it should be. After going down to X-ray, they were able to follow the line with dye and confirmed that the tube had NOT moved. So this means.... Not sure. It's possible there was some back leakage of the tube from the intestine, but it's pretty well placed so I'm not sure what happened. And the Dr is not too worried about it as long as Lyla doesn't get more gaggy or start spitting up, and so far she hasn't.

She did have a bad fit in the afternoon which she hasn't had since Saturday ( according to Dr. Vlautin). She was pooping and got really upset and turn purple in the face and really modeled all over. She continued to have smaller fits/random outbursts for a good part of the afternoon, maybe an hour or two, where I would be continuously patting her back to calm her down. This, coupled with the milk, had us feeling strongly about postponing bringing her home soon.

The Dr. Had taken Lyla off Ativan the day before and felt this was also a contribution to Lyla being uncomfortable. She is getting the tiniest dose that we aren't sure it's even getting down the Gtube sometimes, but I guess Lyla likes it. So she is back on with the plan of fewer doses to gradually wean her again.

Talk is still going on about a different line to feed Lyla. Dr. Vlautin originally thought the G-J tube but Lyla is too young and small. So now she would get just the J from her Mic-key, removing the line to her tummy, and replace the ND down her nose to a NG so we could give her medicines that way. The medicines need to go to her tummy and not the small intestine. I'm not sure which way they will go, but if she's not big enough for the G-J, then there is no point of switching anything around.

Day 25

  We are so grateful for all the prayers and support we have continued to receive throughout this whole ordeal. We feel very blessed to have amazing friends and family. Thank you!

  So the plans have changed for Lyla. Originally they wanted to try the Gtube if she didn't spit up after a couple of days. But GI, the cardiologists, Dr's and nurses agree that they want Lyla to have a good solid 2-3 weeks of gaining weight before trying to feed into the tummy. Therefore they do not want to try the Gtube right now. This mean that Lyla will likely get sent home with the ND tube. So far Lyla hasn't been too great with gaining. She does a little at a time and then maintains a day or two and then gains and back over again. So we are really hoping Lyla will start gaining consistently so we can get that tube removed from her nose and get food going to her tummy again!

  Other than that, Lyla's reflux continues to make her gag and wretch. I feel so terrible when this happens because she looks so miserable. It's a terrible feeling, and it makes her heart rate dip way low (80's).

  Made some really great eye contact today! She hasn't been the best at focusing her eyes on an object, or person, and today she was looking at me and Keeping her eyes locked on me! It was really exciting. Even her primary nurse Cheryl noticed and said she thinks Lyla recognized her name today.

  Went down to radiology to replace ND. It was just barely where it needed to be in the small intestine and coiled in the stomach, so they wanted to get it in perfectly. Lyla, of course, did not like this but she did a great job recovering. After they came out of radiology I said something to the nurse and Lyla cocked her head toward my voice and was looking for me! It was awesome, and I really wish I could have just picked her up right then and held her.

Received RSV shot on Sunday.
Feeds are now 25ml from 22mls, as of Saturday?