Wednesday, April 29, 2009
Thursday, April 23, 2009
One month ago tonight, I took Faith (and way too much stuff!) and got on a plane from Denver to Boston. I was afraid, but I knew I was doing the right thing, and I was excited to get her on Omegaven and start things moving in the right direction. One month ago tomorrow, Faith was started on Omegaven.
Faith had her weekly labs drawn today after her CAIR clinic appointment. Dr. Puder is out of town, so I figured I would probably call Danielle or Alexis tomorrow and ask about them. A little while ago, my phone rang and it was a number I didn't recognize. I answered, and it was Dr. Puder, calling to talk about Faith's labs (have I mentioned lately how much I love him?).
He started off by telling me that her white blood cell count is normal, her hematocrit went from 25 last week to 30 this week (yay iron!), her platelets went way up (a good thing), her triglycerides are normal, and her CRP (an indicator of inflammation/infection) is normal. Then he said, "Her bilirubins are at a level where you can go home." At that point, I went into shock mode, I was stunned! Her total bilirubin, which last week was 7.1, this week is 3.5! And her direct bilirubin (4.6 last week) is 2.0!!! NORMAL levels for bilirubin is anywhere from 0.3-1.2 for total, and 0.0-0.4 for direct, so we have a little bit to go to be able to say she's in a normal range (she's actually NEVER been in the normal range in her whole life), but 2.0 is AWESOME!
Other good news from today- she doesn't need her blood pressure meds anymore, she gets to nurse 5 times a day now, and we are going to start increasing her feeds by 2 mL every other day.
I am SO thankful that we have not had to go down the transplant road! I can't wait to get back to Colorado and show her to the doctors who thought we should take her to Pittsburgh to be put on the transplant list! And I can't wait for all of her nurses at the hospital in Denver to see how great she is doing now!
I really AM going to get some pictures posted tonight!
Wednesday, April 22, 2009
Well, it's been a week again since my last real update. Sorry! Where to start...
Faith's first appointment with the CAIR clinic a couple of weeks ago was a little overwhelming. I had been told to expect that, so I wasn't surprised, but I'm not sure I could have really been prepared for it, either. I'm sure it was extra overwhelming for Dave, who was meeting everyone there for the first time...
The nutritionist made mention of Faith's age now and that we could start thinking about introducing solids, but I told her I don't think Faith is ready yet and I intend to put it off for awhile still. While I don't usually live by what the American Academy of Pediatrics guidelines say, I do agree with them when it comes to introducing solid foods, and they have changed their guidelines to recommend exclusive breastfeeding for the first 6 months. There also are the recommendations based on development, like that the baby should be able to support and lift its head and sit up supported, neither of which Faith can do yet. She's getting there on head control, but I think it'll be awhile for the sitting, so we won't be thinking about solids for a couple of months, probably.
The nutritionist also asked about Faith's oral eating, so I told her what I had been doing with the bottles, and she thought it was great that Faith was tolerating it. I told her I had breastfed her the one time, but was worried because I didn't know if she was getting too much... but she thought it would be better to just breastfeed and not do bottles at all! She talked the docs into it, so they decided that I can turn Faith's g-tube feeds off for an hour at a time, four times a day, and breastfeed her as much as she wants! She is doing great, but still dependant on the nipple shield, which I hate. Anyone who has advice on how to transition her away from that, please let me know!!
She also got decreased to 18 hours on TPN. Still the same volume, but 2 extra hours free, so now she has 6 hours off each day. I try to breastfeed her at least once or twice during those 6 hours, so that I have a little time every day where she is cordless. I love how it feels to hold her without anything attached!
We started giving her an iron supplement through her g-tube, since she is pretty anemic. We should find out with this week's labs if it is working. She seems to be tolerating it ok, it hasn't made her throw up that we've noticed. She did throw up three days in a row last week, with green throw-up on Friday, which was pretty nerve-wracking (green throw-up is never good!). She only did it one time though, so they said not to worry too much about it. And she hasn't thrown up since then, so I think it was a fluke.
I already talked about her appointment last week, where her bili numbers were so much better. She also had GREAT weight gain, from about 4.8 kilo's (a little over 10 1/2 lbs) to 5.0 kilo's (11 lbs)! It's still not enough to land her on the growth chart, but it's good news, and I can't wait to see how she does this week, with increasing her time off TPN and taking those breaks from her continuous feeds to breastfeed... I've got her continuous feeds at 17 mL/hr now, and she seems to be doing great, so I'll probably try to bump her to 18 in the next couple of days.
We had a great visit with Dave, the boys, and my mom. They left early Monday morning to go home. Faith and I are taking a couple of "down" days now to recuperate- neither one of us is used to doing as much as we did in the past 2 weeks! We didn't end up going to the circus, but we did go to the aquarium... We got a pass from the library on Hanscom AFB that got us in for $8/each, and I'm glad we did, because we all left pretty disappointed. I think it's just because we've all been to the aquarium in Chicago, but none of us thought this one was anything special, and we didn't think it was very handicap/stroller accessible, either.
Speaking of things not being accessible- I emailed a complaint to the director of the Green Line of the T here the other day. Probably at least 5 times in the second week that everyone was here, we had to carry the strollers up the stairs to get on the train, because there was not a car that didn't have stairs. My mom's not even supposed to do stairs, let alone hold the stroller so we can get it up. Thank goodness she and Dave were there, when it is just Faith and I we won't be able to get on the train at all if it doesn't have accessible cars. And then, in order to get to the aquarium on the train, you have to transfer from the Green Line to the Blue Line. The station where you have to transfer has no elevators! You have to go down a level to change trains, so we had to carry the strollers down the stairs (and it was a big flight of stairs). I still haven't heard anything back from them... but depending what I do hear (if anything) I might be contacting the ADA on that stuff too.
Let's see, what else...
Faith is doing great, you can hardly tell she's jaundiced anymore. She's alert and attentive and loves to play with toys, she recently discovered her hands and will stare at them throughout the day... she's fascinated by hands in general and will grab your hands if you put them near her and stare at them. I think she's getting another tooth finally, she's been chewing on anything she can get to her mouth (mostly her shirt, blankets, and other fabric stuff). She's bitten me a couple of times nursing, which is not cool and hurts even through the nipple shield.
We have our next appointment at the CAIR clinic tomorrow afternoon, can't wait to see how much she weighs and what her bili numbers will be this week!
(I will come back and add pictures later!)
Wednesday, April 15, 2009
Months ago, when Faith was first born and being such a fighter through so many hard things, my dad was having a discussion with a coworker about Faith, and they decided she was going to be an "ass-kickin' princess". My dad said something about making himself a shirt with a picture of Faith on it, that would say "Papa's ass-kickin' princess". So, I made her this shirt, just for him :)
And, just for color-change comparison- that picture was taken today, and this picture was taken 6 days ago!
WOW... Faith had an appointment with Dr. Puder this morning. The last few weeks Faith's bili numbers have been higher than they were when we got here. Her bloodwork from Thursday's appointment at the CAIR clinic came back with her total bilirubin at 10.8 and direct at 7.2, which was the spike we expected. This week though, we noticed that she is looking more and more pink, so we were excited to find out what her numbers would be this week.
So this morning, they drew her blood (from her line this time, since they had to poke her three times last week to do the peripheral draw, so we're going to alternate instead of torturing her every week). Dave and I went and got breakfast in the cafeteria while we waited for the labs to come back, and then they called us to come back to talk about them.
We got to Dr. Puder's office and the first thing he said was "Her direct is 4.6." It didn't even register with me, I thought he was talking to Danielle or Alexis, since they were in the office too... then I saw their excitement and I realized he was talking to me! Her TOTAL bilirubin this week is less than her direct was last week!!! Her total is at 7.1, and her direct is 4.6. To put it in perspective, we can go home when her direct gets to 2.0! He estimated probably another 2-3 weeks for that. Then we may still be here for a bit waiting for the Cisapride, if Dr. Duggan still thinks it's necessary. But then we can go home, and just come back every 2 months for follow-ups!
I have WAY more to update, but I've been really busy since Dave, my mom, and the boys are visiting. I will do that as soon as I can! Oh, and at her appointment last Thursday, they said I can nurse her 4 times a day! After almost 2 1/2 months of not nursing at all, she is back at it and doing great! :) Her continuous feeds are at 16 (they were 13 when we got here, we are increasing very slowly as she tolerates), she is off TPN now for 6 hours every day, and she is gaining weight well! It's all very exciting news and HUGE steps in the right direction!!
I will do a picture post in the next couple of days to show off our pretty pink girl :)
Wednesday, April 8, 2009
Today was a very busy day. Faith and I took the train for the first time and met Dave, my mom, and the boys at the station where the train closest to them meets up with the train by us (Park St.). It was much easier than I expected, and I foresee many train rides in our future here in Boston! Faith and I got there first, so we went up to ground level to wait. The station is right below Boston Common, so we got to see that. Unfortunately, Faith's not a big fan of wind, so we didn't stay out long, and ducked into a Dunkin' Donuts for a snack to wait. I think when the weather warms up more, we'll be returning for walks.
We did get an awesome new accessory this week that has made life much more pleasant! It's called a Peekaru, and its inventor, Melissa, who I know from CAP (a local to Denver online group) generously sent us one (she sent us an awesome new carrier too!). I have a feeling I will be handing out a LOT of her business cards, as every time I wear it, at least one person asks me where I got it! I don't know how I lived without it... Oh wait, yeah I do- I buttoned my coat around both of us, and now have buttons to sew back on! Everyone who uses a baby carrier when it's cold out needs one of these!
Anyway, I'm so glad they were all able to come out. Noah and I have never really been apart for more than a couple of days, so he's been acting out more and I have missed him so much. It is so nice to be able to spend time with him and with Dave, my mom, and Nathan. We went to the Children's Museum and spent a couple of hours letting the boys run and play there. We'll definitely be back, since we get in for free with our military ID's, and it was really easy to get there on the train. We also saw the circus tent while walking trying to find somewhere to eat, I think we'll take the boys there, too. It's the same circus that the clown doctors at the hospital are from, and it's actually a non-profit that has a lot of neat community outreach programs. We're looking forward to enjoying all of the local attractions. Hopefully the weather will look at the calendar and see that in fact, it IS spring, and start being a little better for us!
Unfortunately, we thought they would be able to stay on the air force base while they are out here, as that's what we were led to believe when we initially called to ask about it, but now they found out that they will have to renew their reservation every single day, and if someone else needs a room, they will lose their room. So pretty much, every day they could potentially find out they don't have anywhere to stay. We are trying to figure out another arrangement, but it's hard. They're not allowed to stay with Faith and I (and honestly couldn't fit if they wanted to!), and we were really counting on the AFB since it is so affordable, about $40/night. Instead it seems that we may be paying almost 3x as much for them to stay in a hotel, so we may have to dramatically shorten the length of their visit :-( I hope we can figure something out, it sure would be depressing to have them come out, only for them to have to go home again right away because we can't afford for them to stay!
In other news...
Faith's C-diff isn't gone... in fact it's back full force, so she restarted her antibiotic for it. I won't go into details about how I knew it wasn't better, but I will say the guy at the lab when I took the sample in for them to test said something about how they didn't have orders for urine, if that gives you a clue...
We had a nurse out last night to watch me prep Faith's TPN and get her hooked up. I was having issues with air backing into the tubing as I went to hook her after priming (I forgot to clamp the Y!), and then with blood backing up into the tubing after I hooked her up. The first time the blood backed into the tubing, I freaked out and didn't know what to do... it was Sunday night so there was no one for me to call, and I ended up calling Abby Brogan, Ellie's mom, hoping that she'd know what to do since she has a couple of years' worth of experience with this stuff... she calmed me down and suggested I call Dr. Puder and the homecare company. So I called Dr. Puder (well, had him paged). He called me back within 5 minutes of me having him paged (have I mentioned how awesome he is?) and calmed me down even more. He told me it wasn't a big deal as long as I didn't see any clots. I think he may have been slightly concerned since Faith was screaming in the background like I cut her arm off... In my flustered state I dropped every single one of her pacifiers and was in the process of sterilizing them in the bottle warmer (I love that thing!) and she was NOT happy about it. He asked a couple of times if she was ok, and if I was sure everything else was ok... I think I got him reassured though. Finally I called the homecare company and asked what the heck was going on, and why it was happening, and the nurse on the phone said I needed backcheck valves and that she'd send some out the next day. Well, I didn't get any... and it happened again a second night. The second time it happened, I was just plain mad, and called and asked again what the heck was going on. The nurse the second night said she wasn't sure but was able to talk me through it to get Faith hooked up, and got the ball rolling to get the nurse out last night. The nurse last night watched and said I'm doing everything right (since I remembered to clamp the Y last night) and I added a backcheck valve to the tubing right at the end before where it hooks up to her, so no more bleeding back! It was good to have someone watch and reassure me that I'm doing everything right. The only bad thing was, as I pushed the spike into the Omegaven bottle, I pinched my finger on the metal rim of the bottle and cut it, and now I have a big nasty blood blister there.
We had a bit of an "Oh NO!" moment as we were changing Faith's Broviac dressing. The way they do it here is quite the process- there's a fancy little sterile kit with everything you need. The whole process is sterile, with masks, sterile gloves for me, the whole deal. We got the old dressing off, then I put the sterile gloves on and could no longer touch anything without being contaminated. I got her site cleaned with the chloraprep, and was standing there waiting for it to dry. The nurse was holding Faith's line up to let it dry all the way (holding by the clamp, which is ok, since it's not important for that part to be sterile) and Dave was standing at the end of the bed holding the sterile kit. The next thing we knew, the lights went out! I think I said something along the lines of "Oh shoot, what do we do now?!" It was absolutely one of the worst possible moments the lights could ever go out. Luckily, they came right back on, and we hurried and finished before they could go out again.
I've been gradually increasing Faith's feeds. On Saturday (the day after we were released from the hospital) I increased her to 15 mL/hr, then today I increased her to 16 mL/hr, and she's tolerating it! I also latched her on and let her breastfeed for a little while Saturday night, although I'm not sure how much she got... I did see her swallow though so I know she got something. She tolerated that well, so the next day I gave her some milk in a bottle (didn't measure because I wasn't really thinking about it!) and she kept that down too, so then the next day I measured out 10 mL and gave her that in a bottle, and she drank it all and kept it down! She did get worse reflux afterwards, and I thought she was going to lose it a couple of times, so I think next time I try, I'll do 5 mL a few times a day, instead.
My hope is, if I could get her to take 5 mL maybe 4 or 5 times a day, that would add an extra 20 or 25 mL to her daily intake, and maybe it would improve her weight gain a little. And if she starts gaining weight better, we'll be able to start knocking hours off of how long she's on the TPN every day, which means more time when she ONLY has her feed running, and she's a lot more portable. If I get her to take 5 mL without increasing her reflux and thus her discomfort, then I might try 7 mL and see what happens, and if she does well with 7 mL, then I might try 10 mL again. Even 7 mL 4-5 times a day would add 28-35 mL to her daily intake, which at her current continuous rate would be like adding an extra 2 hours to the day. At 10 mL it would be like adding 2.5-3 hours to the day. Every little bit will help, especially since she's never gained weight very well for more than like a week at a time, so she has some catching up to do. And maybe when she gets on the Cisapride, her stomach will work a little better, and she'll be able to tolerate more for feeds.
I haven't really gotten to talk to her team about specifics for plans in terms of increasing her feeds or doing oral feeds. I did get the ok from both Dr. Duggan and Dr. Puder on trying oral feeds, which is why I figured it was ok to do it. I'd like to aim for at least 4 bottles a day, starting at 5 mL and working up depending on how she tolerates it, and I'd like to try to nurse her at least once a day. Dr. Puder pretty much told me to increase her continuous feeds whenever I feel like it's time and just go by her signs in terms of tolerance. I've seen her not tolerate things enough times now that I know exactly what to look for, and I'll know right away if she does stop tolerating feeds, so I can back her down to where she's ok again. I like having the control over how her feeds progress. I really kind of always have had control, since I was ok telling the doctors when it was time to stop, but it's nice to be able to do it on my own without having to fight with doctors.
We have our first appointment with the CAIR clinic tomorrow, I look forward to seeing where we go from here! Faith's last blood draws before we left the hospital were her baseline Cisapride labs, and Dr. Puder told me the other night that her direct bilirubin was down to 7.0... I'm not holding my breath to believe it's already coming down from the Omegaven, since most of the time it takes a couple of weeks to really even spike... but it sure would be nice! She'll have her next labs drawn after our appointment tomorrow, and we should know the results pretty quickly to see what her numbers are really doing, so stay tuned for that! It is definitely exciting to see her getting better, her color is better (although still yellow) and she has started to have a lot more awake time during the day. Thankfully, she's still sleeping through the night! Hopefully I can get back into that routine soon, too, and get out of this insomniac routine I've fallen into lately! I am falling asleep, so I should go now! I'll try to get on and post more recent pictures sometime tomorrow!
Monday, April 6, 2009
Well, technically it's Tuesday now. I'm sorry for not posting more updates. This has all been much more difficult and time consuming than I anticipated! Faith's med schedule isn't as condensed now as it was when we left Denver, so she has meds a lot more often, 7 different times throughout the day. And then I have to take her off the Omegaven in the morning, and then off the TPN in the afternoon, and then mix and hook up the TPN and Omegaven at night (and that's not working out as easily as it was at home, either!). Throw in some pumping (not nearly as much as I should), a shower, and maybe one or two meals, and there's not a whole lot of time left!
Faith had an upper endoscopy on Wednesday, trip #7 to the OR. I almost wonder if the surgical nurses think it's weird that I'm not nervous before she goes to the OR anymore... The doctor also placed a manometry catheter to do that test on Thursday. Dr. Rodriguez, the GI who did the endoscopy, said that visually everything looks normal. There wasn't any visual damage to her esophagus from her reflux, which is good. He did say her pylorus (the opening from her stomach to her intestine) is a little tilted or something, but he didn't think that was something that should be causing her issues. They took some biopsies, I haven't heard anything yet about how those looked.
Thursday's manometry test was a measure in patience. Well, really all week was, as every day when I woke up, I heard something different about when we'd be getting out... it seemed like every day they said it would be that day, and then an hour later they'd tell me it would be the next day. But anyway, Thursday morning they started the test at 6:30. I stayed at Devon Nicole the night before (I started staying there Tuesday night, since I had no real idea when we'd be discharged, and figured it would be better to get the room set up- and CLEAN- before taking Faith there), so I had to get up really early to be there. When I got there, she was hooked up to the machine and it was running, but there was no one in the room. The end of the catheter down her nose looked like an octopus, with 8 tubes coming together into the one that went into her. The 8 tubes were hooked up to this machine, and the machine had a computer screen with 8 lines on it. Each line corresponded to a different place in her digestive tract. No one was there to tell me which lines were what, but I figured it out anyway. For the most part, the lines were pretty straight, but then she would swallow, and the first three lines would have some action: first the top line, then the second one, and then the third. I figured that was probably good. The other 5 lines stayed flat. I figured that was probably bad. Then later, Dr. Rodriguez came in and explained it all to me. I was right about the first 3 lines, and I was right in my assumption that it was bad for the other lines to be flat. There was water running into the catheter, and that's how it measured what was happening. He explained that they would also feed her and give her some motility meds, Erythromycin and Octreotide, while the catheter was still in, to see what would happen. I spoke up then and said if they fed her without giving her motility meds first, she would throw up, and they would probably lose their catheter... After I said the same thing to three different people, they finally listened to me, and decided to do the meds before feeding her. (I have seen her vomit up way too many NJ tubes to believe that she wouldn't do the same with a manometry catheter!) They gave her some IV Erythromycin, and we started to see a little action in her intestine (it was an antro-duodenal manometry test). Then she threw up three times. By that point, the test had put as much volume of water into her as she normally takes in a day in feeds. Next, they gave her a shot of Octreotide. I had heard of it being used as motility, but never really looked at it more closely... but I remembered it from when Faith was on it for her chylothorax. The Octreotide didn't seem to do that much for her. Next they fed her. A little action in the intestine... then it was time for her regular Erythromycin dose. That was interesting. I watched the monitor closely, anxious to see if this drug we're giving her actually does anything. Sure enough, about 10 minutes after we gave it to her, there was a little action in the intestine! You may notice I never mentioned any action in her stomach... that's because there was none, other than when she threw up. This means she has a new diagnosis- gastroparesis. If you read about it, it makes some things make a lot more sense, like why when she was eating, it was hard to get her to keep eating and get to the amounts they wanted her to be taking because she acted full, and why when she did throw up, it was never right after a feeding, but actually was usually just a little bit before a feeding. I honestly have NO idea how she can eat to her stomach when it's not working...
Well, I am falling asleep since it's 2 AM. I will post the rest of the update later!
Sunday, April 5, 2009
Sorry to everyone for the lack of updates! We are out of the hospital, and I have spent the past couple of days just trying to get into a bit of a routine and get things organized in our room here at Devon Nicole... I really need to take advantage of the fact that Faith is sleeping right now and take a nap, and then we will be going for a walk to find Whole Foods because my milk supply needs some help and that's the only place I know for sure I can get what I need. On the bright side, it is a pretty nice day out for a walk.
I WILL post a longer post and some pictures, probably tonight!
Friday, April 3, 2009
Just wanted to post quickly and remind everyone about Denver Diaper Co's 5% day today! Thanks again to Amy for sponsoring us!! Take a look at her store for awesome cloth diapers and lots of other things, I'm sure you'll find something you need :)
more update coming later- we are getting out today!