Pre- and post-op pics

Sunday, March 15

Here are some pictures from the last couple of days, pre-op and post-op. Faith is feeling much better already this morning, needing less pain meds, and even giving us smiles! They are starting feeds now, at 5 mL/hr.

Faith's last night with the nasty nose tube and tape mustache!"Please God, let the surgery go well, so they can get this yucky tube out of my nose!"Our room, pre-op. They have to take Faith down in a warmer instead of her bed.Pre-op, downstairs in the OR holding areaMommy and Meema in the pre-op holding area... Faith's looking pretty yellow here...First post-op back in her room, not feeling too great...Post-op, trying to rest but we still had messing to do (getting the orange off of her)This is a close-up of her tube. I have no idea what it will look like for real, because right now they just have the Corpak tube taped in place, but I know it can't stay that way or I won't be able to change the gauze under the g-tube...Post-op last night, resting with the help of some Ativan...Feeling much better today!

Post-op, surgery #6

Saturday, March 14
Well, everything went fine. They got her tube put in with less trouble than they thought it would be (just from scar tissue/adhesions from her prior surgeries). She isn't big enough for an official G-J tube, so hers is a little different. They put in a regular G-button and fed a Corpac tube (just like the ones they put down her nose) into it and down to her intestine, and then taped the Corpac tube in place. I don't really know a whole lot about it yet, but I'll have to take a class this week, probably on Tuesday, so I should know more then. (Although I wonder how much of the stuff will apply, since her tube is different...)
I told Dr. Partrick our scheduled departure date, so everyone who needs to know is now aware (Jann the case manager talked to Dr. Soden the other day.) And Dr. Sandoval was there for the surgery, which was reassuring, knowing that the same people who'd done all of her surgeries were taking care of her again.
I'm slightly overwhelmed by the amount of stuff that needs to get done this week to be ready to go, but I know it'll get done somehow. Please everyone pray that her recovery from this goes smoothly and that nothing unexpected (negative, anyway) happens so we can take our trip as planned!

Four months old!

Friday, March 13

Faith is four months old today! It's hard to believe... she's starting to act more and more like a four-month-old though, and I know from what I've read of others' experiences that once she's on the Omegaven and her liver starts getting better, she'll be even more like a "normal" baby.

She loves the little fishies on her swing (the mobile) and gets so mad when they stop! And she's started holding her hands together a lot more, playing with her fingers... and she's started trying to reach for toys hanging in front of her! She's started trying to roll over from back to tummy, and she's getting better with head control, but is probably a little behind there... I think once I can start wearing her more in the wrap that will help.

I am asking a million questions a day now, just trying to learn all of her stuff at a more gradual pace, rather than the cram-session that usually accompanies NICU discharge (or so I hear). I find it all intimidating, but I think it'll be ok... there's just SO much to remember, and some of the stuff (especially involving her Broviac) is SO important to keep her from getting an infection! She's made it 4 months now without ever having a line infection, which is amazing and wonderful, and I want to keep it that way!

Faith will be having her surgery at about 9:00 AM tomorrow. I've been searching all over for pictures of what her tube will look like, but can't find anything, and really can't picture myself what it will be like. Dr. Potter explained it yesterday (as best as Dr. Potter can explain anything!) and it will be like a regular G-tube with another tube like the one she has in her nose fed down it and to her intestine. I've seen pictures of the regular G-tube, but never anything quite like what he described.

When we were debating the G-tube before, everyone whose kids had them said they weren't a big deal, and when you eventually take it out the hole closes up and looks like another belly button... so I thought it was kind of funny, Faith doesn't have a "normal" belly button, and as it is now what the surgeons tried to give her probably won't look much like one with the extra times they've had to go in that incision, but she does have two scars from her chest tubes that look like belly buttons, and then she'll have a third one from the GJ-tube. So when she's older if anyone says anything about how she doesn't have a belly button (kids are mean!), she can come back and say she actually has three :)

I heard from the Boston social worker (Stephanie) today; I had emailed her asking if they had resources for getting from the airport to the hospital. Thinking about the flight, flying by myself with her and all of her "accessories", is kind of scary... please pray that I'll have peace with that. I'm not a big fan of flying anyway, and have only flown alone a couple of times, and have never flown with a baby... and I'll have to make sure that everything is timed right that she'll be all taken care of for meds and TPN and feeds and everything... her feeds last 4 hours, so I'll have to start a new one right before we leave and then the next one right after we land... and then I have to make sure that I've pumped right before we take off and pump again right after we land... I'm looking at booking a red-eye flight so that it's non-stop (it's the only non-stop we can afford), so we'll be leaving Denver around 11:30 PM and getting to Boston at about 5:00 AM. I find all of this slightly overwhelming... so many things to think about all at the same time!

I'm still waiting to hear from our case worker here (Jann), she's supposed to be talking to a case worker there today hopefully, to find out more about the insurance stuff, like how likely it is that they'll pay for everything if we go out there on our own. I'm holding off on booking our flight until I hear confirmation from her that the insurance most likely will pay. We know they might not pay for the Omegaven, but that's not a big deal b/c the hospital pays for it if the insurance doesn't, but theoretically they could deny everything else (labs, inpatient stay, etc) saying it has to do with the Omegaven. So I want to know they probably won't do that before I book the flight, since we can't afford to do this if the insurance won't pay anything.

Anyway, I could go on all day about all the little things that have me nervous/worried right now, but I won't, I'll just post some cute pictures instead :) Stay tuned tomorrow for cute pictures without the tape mustache!

Faith got all dressed up for her four month "birthday" :)

Faith was feeling spring-y yesterday :)

Wednesday, March 11
Well, things are seeming to fall into place and become more definite. Faith will be getting her G-J tube on Saturday. She has to be NPO for that, but hopefully re-starting feeds after that will go smoothly, and we will go to that place that starts with an "H" soon after that. From there, we will most likely go on to Boston on our own.
Our case manager came in this morning to tell me that Boston Children's is a non-network provider for our insurance. They also are refusing to cover anything for Faith until she is discharged from the hospital. SO, what that means is that if we did a hospital-to-hospital transfer, the insurance won't cover the transport, or the initial inpatient stay in Boston. (The transport alone would be $26,000!) That's the bad news.
The good news is, they seem to really want to send us home from here anyway, and then we'll be able to fly commercial to Boston. We have pretty good insurance, and they'll pay once Faith is discharged, so even non-network, we can make it work and just pay the out-of-pocket costs. I was never very worried about the healthcare costs associated with the Boston trip... it's the rest of it- eating, living, getting around- that's going to be a drain on us financially. We are very blessed to have this insurance available to us now.
There seems to be an interesting power struggle going on with Faith's doctors right now (well, for the past week really). Surgery has followed us and been her primary doctors the whole time we've been here. But pretty much since Dr. Sandoval switched to his urology rotation, I haven't seen a surgeon. The last time a surgeon talked to me was when we had our conference with Dr. Partrick. And neonatology has gotten more involved, with Dr. Kinsella making decisions and writing orders about Faith's feeds. So last night around midnight, when I posted last, he bumped her feeds to 17 mL/hr. This morning, Dr. Potter bumped her feeds to 18 mL/hr. Of course she threw up and was just generally unhappy and uncomfortable, since anyone who really knows anything about her knows that it's NOT smart to increase her twice in 12 hours... So Kinsella said to back her down and hold her at 17 mL/hr. So Dr. Potter must have seen that, and he wrote another order to bump her back to 18 mL/hr, and then increase to 19/hr tomorrow and 20/hr the day after that.
So Donna the NNP came in and asked if I thought she'd be ok increasing like that, and explained that they couldn't hold her at 17 if surgery wrote to increase to 18... so I asked whether we could hold her at 17 if I said no to increasing her, since realistically they can't do much of anything without me agreeing it's ok. I told her that Faith was really uncomfortable and threw up this morning when she was at 18, and I don't see a point in making her uncomfortable when we're planning to go to Boston anyway and if she's going to get pushed to take more, it'll happen then. So she called surgery to talk to Dr. Partrick; he and Potter were in the OR together, so she was able to confirm with both of them that we're holding Faith at 17 mL/hr.
All I can do is hope that we get out of here soon, and that the doctors in Boston have slightly better communication skills than they do here... Still no more definitive word from them...

a little yellower, field trip, and more info

Tuesday, March 10
We thought towards the end of last week that Faith's eyes are looking more yellow than they had been, so we knew her numbers would be different again. Her labs this week are a little worse, her direct bili is back up over 6, and her ALT (liver enzymes) went up to 325 from 299... I really hope the Boston stuff can happen quickly!
We took a field trip this morning to fleuroscopy again. I think Faith has a thing for Fleuro Room 1, she's down there at least once a week. As much as we don't want her to have a more permanent feeding tube, we don't want her to have NJ tubes put down every other day. So, we're hoping they'll decide soon to put in a G-J tube to save her some of that stress. They've said they won't even think about it for another couple of weeks, though.
We don't like the idea of tube feeds, but really until they figure out why she's not able to tolerate feeds to her stomach anymore, it's our only option. So we've come to terms with the fact that she may be on tube feeds for awhile... and realistically, she may be on a combination of tube feeds and TPN for quite awhile, since there's no magic wand to wave and suddenly make her tolerate full feeds.
I've been paying more attention to her Broviac care, since I know I'll have to take that over soon. And I've been asking more questions about everything, too, just to try and prepare myself for all of it.
I realized the other day I haven't really posted much info about the Omegaven, even though I've talked about it alot. There is a good amount of information on this website. It's not the only reason we want to go to Boston though, we are really looking for a second opinion on all of Faith's issues, and we're hoping that since there is a whole team of doctors there that specialize in issues like hers, maybe they'll have some different ideas and will be able to get things working like they should.