Color change, elaboration, and pictures

Friday, January 30

When we first got here, I never imagined that we'd still be here as we're going into February... it almost seems like a long dream and I just haven't woken up yet. But, Faith is a lucky little girl, because how many people can say that they have a detailed account of the first 11+ weeks of their life? And she has been responsible for multiple changes to policies in this NICU already...

I changed some things around on the blog today... I'd love to do a cool new template, and google'd for one, but once I find one I like, I have no idea what to do next. Anyone who can help me with that, shoot me an email or call me to talk me through it! I also started a list on the side of the blog, under our picture, of different helpful hints I've learned so far during our NICU stay. If you have anything to add, let me know and I'll add it!

So. Now for elaboration. We have a care conference scheduled for Monday. Hopefully it will help us determine our long-term plan. As of right now, Dr. Hall is on a completely different page than Dr. Partrick.

Dr. Hall seems to agree with us, that a baby who just last week was taking by mouth 80+% of the amount of calories she needs to grow DOESN'T need a g-tube. He seems to be leaning more towards getting Faith up to the biggest amount of oral feeds she can tolerate, and making the rest up with TPN. He assures me (and from what I have found in my research, I believe him) that once she is taking the majority of her calories by mouth, rather than from the TPN, her cholestasis should start getting better. I am VERY glad that we have Dr. Hall on our side with this, I think that give us a big advantage.

If, once she gets down to 20% or whatever it will be of her calories by TPN, the cholestasis doesn't get better, and it seems like she may need to be on the TPN for awhile still, I have already begun looking into Omegaven, and actually yesterday I spoke with Dr. Puder (the doctor in Boston in charge of the trials) on the phone and he said to let him know if we need any help getting it. Hopefully on Monday I will meet the GI doctor who is in charge of it here, Dr. Soden, and Dr. Hall said that he would try and talk to him, as well, to give him a background and find out if Faith qualifies for the Omegaven. I hope that Dr. Soden will see us; from what I can find about him, he deals more with short gut... Faith doesn't have short gut, but hopefully her degree of cholestasis, the probability that she will remain on some degree of TPN for awhile still, and my interest in the Omegaven will be enough to convince him. Jan spoke briefly with him on the phone earlier, but pretty much just long enough to confirm that he won't be able to come to the care conference on Monday, but that he or someone else he sends will try and come see me on Monday.

Dr. Partrick and the surgeons are convinced that Faith can't tolerate enough oral feeds (bolus feeds) to grow. They want to say that it was the volumes that caused her intolerance, when in fact I went back and did the math yesterday, and she was only taking 100 mL/kg of body weight when she started not tolerating her feeds. They want her to be taking about 150 mL/kg. On Thursday and Friday last week, she took 120+ mL/kg, and she tolerated it just fine. The difference on Sunday when she started showing signs of intolerance was that we were feeding her the 22 calorie breastmilk- milk fortified with Pregestimil formula. Then they wanted to use her throwing up as a sign of feeding intolerance, but I called them on it. I asked Dr. Partrick if she was throwing up because of not tolerating feeds, wouldn't she be throwing up pretty much every time we fed her? He seemed slightly defeated when he told me that yes, that would most likely be the case...

Essentially, the root of all of Faith's problems is motility- her intestines just move things through VERY slowly (it took 10+ hours for the barium from the UGI study to make it all the way through for her to poop it out). So the surgeons think that the way around her motility issues is to just avoid feeding her real amounts at one time, and instead put in a g-tube and do continuous feeds. The idea has been tossed around to only do this at night, and allow her to eat normally during the day, but last night when I talked to Dr. Partrick, he seemed to sound like he thought it would/should be all the time.

That is why we said no to them putting a tube down her nose last night. They wanted to do that, and then start continuous feeds. We saw through their plan though, and we know that if we let them do that, it will just give them more fuel to push us in that direction, because they'll be able to say, "Look, it worked, this is what she needed all along." Surgeons have a distinct personality type. Since they can't fix her intestinal issues, they want to do something else to "fix" her. They're very controlling, and they want things done their way. I don't think they're used to anyone telling them "no" or questioning them. They think they're God.

Anyway, I also told Dr. Partrick last night flat-out that unless Dr. Potter and Carlos the resident can be nice, they are no longer welcome to come into our room, and I guess they will just have to talk to neonatology, and have neonatology come talk to me. Dr. Potter has gotten really bad again, honestly he pretty much doesn't come into the room unless Dave is here. I have to wonder if he thinks Dave will control me or something (little does he know...!). Or maybe he just thinks Dave will protect him... Either way, he is condescending and rude to me, and even nurses who have never seen us interact can tell right away, and have commented on it after he has left the room. And don't even get me started on Carlos the resident... there used to be a female resident (I think her name was Janine) who was horrible. She always looked like she had just tasted poop, she was horribly rude to everyone, and just short and snotty and awful. Well, Carlos is as bad or worse than she was. And he isn't just rude to me, he's rude to the nurses too. I told Dr. Partrick that I didn't want to have to go down and talk to the Patient Advocates again, but that if it doesn't get better, I will. I am going to bring it up again in the care conference, just to be sure that everyone involved knows that this has again become an issue. I hope Dr. Sandoval comes back soon...

I realized I haven't really explained much about what a g-tube is. I sort of just assumed people would know, which is a silly assumption, because even I didn't know exactly. Keep in mind that I'm not a medical professional, and I've never seen one in real life, this is just my understanding of what it is. Basically, g-tube is short for "gastrostomy tube". An ostomy is when there is a hole from the outside of the body to a certain body part, and stuff either comes out that hole, or in the case of a g-tube, stuff goes in (although with a g-tube, stuff can go either way). So for a gastrostomy tube, there is a hole in the belly that goes to the stomach, and then it has a little cap-type thing on it at the belly. It makes it so you can feed someone directly into their stomach. Or, if they have a lot of problems with air or delayed gastric emptying, you can vent the air or get the residuals (left overs) out. Like I said, this is just my understanding. I haven't looked that closely into it, because as I said above, we don't really think Faith needs one.

On to more positive things... Faith has made quite a bit of developmental progress over the last week or so. She is moving her arms quite a bit, and bringing her hands to her mouth all by herself. She is also smiling more, although never when the camera is ready. And, she's started to coo. Not very often, but every now and then.

Well. That's that for now... I have a bunch of new pictures, so here they are: (I have more than this, but I accidentally took some that got stored in the memory on Dave's camera, and can't figure out how to get them from the camera to the computer!)

Taking her hearing test (she passed).

Before and after of Broviac removal, short-lived as it was... (it's in the other leg now)

Hangin' out in the bouncy seat

Taking the carseat test

Sick of the hospital (and looking a little orange...)

This and the last one are from Sunday night... right before they found out her direct bili had shot up... her eyes look really yellow in this one.

Showing off the new hat Mommy made her :)

Sleeping after getting her new Broviac

I almost caught a smile this time... she's a sneaky girl and stops when the camera comes out!