Holding Steady

Gabriel finally got to sleep and had a restful night. He is continuing to make slow but steady progress in pretty much every area. He is taking 20 ml of breast milk, with orders to increase by 5 ml every 12 hours. If his chest tubes are still not putting out, then maybe by mid-weekish (I made a new word!) he'll get them out! They weaned the rate on the vent down to 20bpm, and will check his blood gas with another possible wean at 8:00 tonight. The neos are slowing down just a tad on the vent weaning since he is eating more now - just to keep from doing too much too quickly. He is also down on his morphine drip a little bit more as well (30 mc, he started at 40). All good news to report today!! He is not coughing quite as much today and his temp is back to normal, so hopefully we are out of the woods for infection, for now anyway.

He won't sleep!!

Gabe is definitely feeling better! He won't sleep! His eyes are always open and he is craning his little neck all around to see everything. Apparently he has been this way since about 4AM. I get him to sleep, slip out briefly and when I return he is wide awake again. It is pretty fun, but I am eating lunch at 2:45 b/c I couldn't leave him! Stacia, his nurse today, taught me how to do his tube feeding - I didn't realize how complicated it was. I watched yesterday, but I guess I wasn't paying as close of attention as I thought. She had me listen to his belly with the stethescope while pushing air in his feeding tube to check if the tube was placed correctly. Then I had to suction out what was in the stomach, disconnect the syringe from the tube - with the suction trying to pull the plunger back in - I felt like I needed more hands, but they do it all the time! Anyway, I figured it out, with lots of help, and fed him for the first time!! Then she turned him over on his tummy, I patted his butt and he drifted off to sleep - we'll see for how long! Josh and co. are on their way back up and should be here in a couple of hours. The temp is back down a little bit, so hopefully it doesn't come back up and we will continue to avoid an infection! OK, I am starving, so I am done here!

Still looking up!

He has done well with his first meals, so they upped to 15 ml and will go up to 20 ml later today. Still no breast milk, but maybe by tonight if he continues to tolerate the pregestinil and the chest tube output doesn't increase. We have kind of taken over the module freezer, so the nurses really hope he gets to start breast milk soon. The vent settings continue to be tweaked down and he has been weaned a litle more from his sedation meds. Dr. Duffy said his chest xray looked good, so I have all positives to report.

One possible issue the nurses are watching - his temp was up a little bit this morning and his secretions are up a little bit (they are having to suction him a little more). She said if it didn't go down in the next hour, she would get blood and urine cultures to check for infection. They say every day you are here, the risk for infection exists. We have talked to many families who have had to deal with that, rather unexpectedly (but I guess if the risk is always there, it really shouldn't be unexpected, but that is life in the NICU). So far we have dodged that bullet, we'll see what the day brings us! Thanks for the comments, we are excited about Gabe's progress and love hearing everyone celebrate with us!

I am posting some pictures from Gabriel's first tube feeding and some other misc. pics from the past weekend (yes, I am a bit behind).

First Meal!

Well...more of a first snack! Yesterday, around 4:30, Dr. Rouse came by and commented on how well Gabriel was doing and how little the chest tubes have put out (they have essentially stopped). He said Gabriel could start the tube feeds, but asked if they could start with an intermediate step - he's asking me? They started Gabe on the low fat formula (can't remember the name) that would hopefully not cause a flare up of the chylothorax. The reason I said snack is they started him at 5 ml every three hours (one oz -ounce- is 30 ml and a lot of 5 week old babies are taking up to 4-6 oz), but it is a start. Here is what we are looking for these first 24 hours on feeds: little or no spitting up, pooping, and no increase or color change in the chest tube output. If that goes well, they'll try the breast milk. This morning when I got there, Dr. Rouse had already been there (the nurses explained that the surgeons frequently do rounds around 5:30 AM, and then circulate throughout the day, between surgeries) and was very pleased with how well Gabe had done over night. He upped the 8:00 feeding to 10 ml, and repeated that if all went well, then tomorrow they would start the breast milk.

Dr. Rouse also said if the feeds went well, they would start weaning Gabriel from his morphine drip. The reason they want to make sure the oral feeds go well is they would like to use an oral medicine to help Gabe through the weaning process. The vent settings continue to be "tweaked", as the Neos put it! His rate is down to 24 bpm, his PIP is down to 26 and his pressure support is down too, but now that I want to type it in, I can't remember the number - but it is down too ;)

It has been kind of an exciting 24 hours, and the next 24 may help determine how quickly things may go from here...

It looks like they only got 9 ml out of both chest tubes COMBINED again today. That is two days in a row, so maybe we will start tube feeds soon...? I hope so! He had another good blood gas, but Neonatology hasn't rounded yet, so I don't know if he will wean. The respiratory therapist assumed he would at least wean on the rate. Gabriel is down to a rate of 28 right now. Last night I asked the therapist what different things they would wean him on and I understood some of it, but not all of it. She said after the rate gets down to 20 or less (essentially no support) they would start on the patient pressure support, which I think means the amount of assistance the ventilator give Gabriel with every breath he takes. They will also wean on the PIP, which stands for Peak Inspiratory Pressure, but I don't completely understand that one. I know intuitively what it should mean, but don't completely get it, got it? Me either. I think once they wean all of that, and if his O2 support stays low and he tolerates that, then we get to talk extubation!! When? Don't ask, I don't. OK, that is all I have for right now! I really hope I have more to report later today, or at least tomorrow.

Not much has changed from yesterday, just waiting for the chest tubes to stop draining. They only got about 9 ml TOTAL for Monday, they got about 50 out for Sunday - so we are definitely headed in the right direction. We pray it continues!! Dr. Rouse said the stitches would come out July 1st or 2nd, about a month post-op. The neonatology team weaned just a bit more on the vent - they "tweaked" the rate from 36 bpm to 32 bpm. Not as big of a change as they have done after other surgeries, but this time we are weaning with a goal of coming OFF the ventilator and I think his blood CO2 levels have been a little on the high side (but still normal), so they are taking it slow. I'm not expecting any other big medical news today, but I'll let you know if I get any!

Josh and the boys left for Evansville this morning, so I am sort of flying solo, but not really. I've gotten to know the nurses so well that we sit and chat about all sorts of topics, medical and nonmedical. I've also got friends and family up here, visitors, and everybody else is here in spirit!!

Quickie update

Dr. Rouse confirmed that the fluid in the left lung was minimal, and nothing worrisome. They are continuing to treat the atelectasis (see prev post for definition) and he seems to be responding, since today's xray showed continued improvement. He put out a little more yesterday from the right chest tube, so they want to delay the tube feeds. So far today, Shannon (his nurse) says she has gotten out almost nothing, so hopefully soon!

One other note: Saturday night we got a call from the front office at the RMH that we had mail. We read the note to discover a police officer from IMPD (Indianapolis Metro Police Dept) named Julie (she has blogged some comments for us) and her husband, retired from IPD, had left the card with a Papa John's gift card. We have been so touched and almost overwhelmed with the cards and gift cards we have received - this was the first from someone we had never even met before. No contact information was left so this last statement is to Julie and her husband: Thank you so much, it really meant a lot to us!