Feeds!!

Tuesday, November 25

So, today is a better day. Our nurse last night was Joanna, and she was really good. She could tell I think that I was upset, and was sort of "fishing" to find out why, and so I told her that it was just really discouraging and frustrating to feel like I really didn't know what was going on. So the next time she was out at her desk, she caught a charge nurse walking by, and told her that I felt that way, and the charge nurse told her to call surgery and have someone come up right away to talk to me.

Well, all the surgeons had just left to go home, the only person there was a research fellow, who never sees patients and doesn't know anything about cases.

He said though that he would make sure Dr. Potter got the message, and that someone from Faith's primary team would come up and talk to me today. So Joanna came back in and told me all of this, and told me to write down any and every question I have, and make them give me answers. She told me that it kind of sucks when babies are followed just by surgery, because then they are the only ones who can really talk about the baby, and they're so busy it's hard for them to get a chance to really spend any time with the parents explaining things. So I started a list of questions last night. I feel sorry for whatever surgeon gets stuck coming up here...

I was awake pumping this morning when the surgeons came by on rounds, so I was able to hear some of what they said. None of them talked to me, but I understand why now since I talked to Dr. S last night. He explained that when they go on rounds, they only have like an hour to see all the kids they have in the NICU, so they have to hurry and get through them as fast as they can. I have to say, it's not very reassuring to hear your baby's doctor (Dr. Potter) say that he doesn't know why she's still swollen. I heard him tell the nurse to run a bunch of cultures, blood, urine, and trach. I went back to sleep after they left, since they come so darn early (6 AM).

When I woke up at 8, the new nurse was here. We have Liz again today. I was going to ask someone that we not have her again, but I figured I'd give her another chance, since there have been a couple of nurses I really didn't like the first time we had them, but then did like the second time. She seems to be better today.

She explained the cultures to me. Basically they will take a sample of blood, a sample of urine, and a sample from her throat, and they will run a bunch of tests to check for pretty much every infection under the sun, to see if there is some "other" reason for her swelling. They were doing the throat one when I woke up. Faith didn't like it much. Until that one comes back negative, now Faith is in "droplet isolation". Doesn't really mean much, other than now anyone who comes into the room (staff-wise) has to put on all the gear they had to wear when she first came, when we were waiting for the MRSA test to come back. So they have to wear this yellow gown thing over their clothes, and gloves and a mask.

They're still doing Lasix and Albumin today... maybe today will be the day they actually work.

So, like you can probably tell from the title of this post, I did get some good news this morning too. They are going to start feeds today! They will start out VERY slowly... just 3 mL every 3 hours, with no increases or anything, but it's still a big step in the right direction! They will take out the OG tube that sucks out her stomach, and put down a new tube that they will give the breastmilk through. It makes me feel much better, because if she did have some kind of an infection or something, I know it will help her to get breastmilk/colostrum, even if it is such a small amount. It will definitely make it feel more worth it for me to pump, too.

Speaking of pumping, I tracked how much I pumped all day yesterday... and between 10 PM Sunday night and midnight last night, I pumped over 68 ounces! (A gallon is 64 oz!) It's funny, because I had just joked the other day that I figured I was probably pumping a gallon a day...

Mom and the boys are back down here now; hopefully the break the boys got by going home this past week was good for them and we can start to settle into some kind of a routine. I know I will be much less lonely.

Faith is getting feisty... she's really getting sick of all these tubes and wires I think. Her arterial line stopped working again this morning, so she gets to have 2 feet again. She doesn't have any IV's, just the Broviac. So the only other things she has that go into her are the OG tube that empties her tummy, and the breathing tube. And she has grabbed onto both of them a number of times the past few days, threatening to take them out. She's been trying to cough it out, too. I keep reminding her that she just needs to be a good girl and pee a whole bunch, and get less swollen, and then they will take the dumb breathing tube out. Then once she starts really pooping, and as long as she doesn't throw up a bunch or anything like that, they'll start increasing her feeds, and then she will get that tube and the Broviac out, and she'll just have the monitors hooked up and nothing going in.

Everyone who comes in to do anything to Faith goes on and on about how cute she is. :) I can't wait to see how cute she is when she's not as swollen... and yes, I do think she looks a lot like Noah. I probably annoy Dave because I go on about their similarities, but he didn't get to be there when Noah was a little baby, so I guess I'm just trying to let him have that experience vicariously through Faith. I sort of knew ahead of time that they would look so much alike though, because the profile ultrasound pictures of her and Noah looked EXACTLY the same. I still think she has Dave's eyes though. Not sure whose mouth she has, since I've only seen hers for that little bit of time before she was transferred over here... But thank God, she got my nose! ;)

I think when I get discouraged, I need to go back and look through pictures from the beginning, and remind myself how far she's come...

She doesn't need a nurse to hold onto her blood vessels where her cord pulled off anymore...

She's not purple, or in a plastic bag anymore...

She doesn't have a big huge bag of intestines hanging above her anymore...

She has both arms and both legs free, and a belly with all of her organs in it!

And even swollen, she's still pretty darn cute! ;)