Saturday, May 21, 2011

Quick update

Some progress today. Ailah will be discharged today if she passes the car seat challenge but would have to return tomorrow for an evaluation. If she has jaundice, she would be re-admitted. If she doesn't pass the car seat challenge she will have to stay but we would push for a transfer to Children's at that point.

We also got some labs back for Lillian, one of her anti rejection meds (mycophenolate mofitil or CellCept) was 2 to 4 times the target we have, so that is starting to look like the culprit. We would like it to be at 2 to 4, but she was at 8 on the 18th. It is likely that the result that we took yesterday will be even higher. Even with a potential cause, we still need to get another result back before we take her out of isolation. Assuming a c diff culture comes back negative, we can take her out of isolation. If it is positive, we have two possible causes.

Big Day - New Surprises and Re-Admission

Big day today! Kathryn and I welcomed a new addition to our family. Ailah (pronounced eye-lah) Guinevere Boer was born at 6:14 this morning, weighing 6 pounds, 13.2 ounces and measuring 19 inches long. She joins big sisters Lillian (who you all know so well now) and Annabelle. Strange to think of how Lillian is a big sister now, but she is. Life should be even more interesting now. Unfortunately though, not all news from today is good news.

Kathryn's labor with Ailah was extremely quick. She woke me up at 4:45AM, and we got to the hospital around 5:30AM, and Ailah was born at 6:14AM, so not exactly a slow process. The labor was so quick that the things that happen during normal labor, such as having the fluid emptied from the lungs, couldn't happen. For several factors, ranging from potentially swallowing fluid during birth to not having a chance to get it out, Ailah was born with fluid in her lungs. Since she is also technically a preemie, the UW has decided to keep her for 24 hours at least, after which we will evaluate where we are with her.

In terms of concerns we have - oxygen saturation. With fluid in her lungs, it makes it harder for Ailah to send oxygen to her body and they've been running on the low side, low to mid 80s. We wouldn't expect a baby to be at 100 yet, but she should be closer. Add to that a low starting blood sugar, and there was minor cause for concern. Right now we are at a crossroads... assuming that the fluid gets better, we should have her home before the end of the weekend. If it doesn't, they could decide to diagnose her with pneumonia (I have no idea behind the reasoning for this, she does not have an infection) and take her to the NICU. If this occurs, I will probably push for a transfer to Children's because...

Lillian has been readmitted at Children's. Shortly after Ailah was born, Lillian started throwing up repeatedly and constantly. Between 6:30 and 12:30ish, she threw up approximately 6 times. It's not abnormal for Lillian to throw up if she has a full stomach and bowels, but we would expect a one-and-done situation from that, and that didn't happen. She kept throwing up even after she had nothing left in her stomach and started throwing up a yellow substance and then just spit. The more she threw up, the more upset she got (understandably of course), and it got to the point that we were worried enough to take her from Children's.

Once at Children's, Lillian continued to get worse. While her and I were waiting to be seen from 1 to 1:45, she threw up an additional 7 times and was miserable. Clearly dehydrated, she was admitted. Kathryn and I had originally thought that it was a poor reaction to the soap we had to wash her pacifier with at the hospital, but Children's was thinking that it was either a poor reaction to her meds or potentially an infection. For now, we have started to run tests (ruled out rotavirus so far) and have dropped all meds except for one of the anti rejection meds in an attempt to find out what is going on. Aside from ruling out rotavirus, we don't really know what's up. Since infection is the most likely suspect, we are in isolation for now, but other ideas have been thrown around like nec (unlikely considering the sudden onset of symptoms) to a milk intolerance (which makes total sense now that it's been suggested, especially in light of her absolutely losing it every time we offer a bottle). Right now we get to wait for more labs and tests and see if the purging of her system continues.

Sorry if I rambled/made no sense, it's been a long day. Not often that you have two kids in two different hospitals. More pictures now of Ailah for now

During an late false alarm last week, Annabelle demonstrates the proper way to sleep comfortably. It's no wonder so many people have back problems...

Annabelle tries to take a picture of Ailah.

Look at that hair! Early indication is a brunette, we'll see if that stays that way though.

Friday, May 13, 2011

Doctor's Visit Update

It appears my previous post about Lillian's Dr visit has disappeared into the ether, never to be seen again. Said doctor's appointment went very well for Lillian. Her BNP is down to 87 (from as high as 1900 in the past), and her last DR-17 levels were 24 (and they aren't even reported as positive under 20, so this is about as low as she can go). Her Cyclosporine levels were a little low at 199 (we want her at 250 to 300), but we simply think that she's outgrown her dose and it's time to go up. Dr. Kemna said her ECHO looks great, so it's about as good of a checkup that we could ask for.

In terms of things we still need to do - eating, eating, eating! At the risk of sounding like a broken record, Lillian continues to have issues eating, refusing to take a bottle at all right now. Also, in the near future, we hope to take her off her prednisone, a steroid she's on currently. Taking this off allows us to also take off a whole host of othermeds, reducing her total from 9ish to 4ish (I forget the exact numbers at the moment, and I'm in a bit of a rush)! That would be an awesome step to make and it's looking like we'll get to do it ahead of schedule.

Wednesday, May 11, 2011

The Elusive New Post

First off, sorry about no new posts in such a long time. Turns out having a infant with special needs at home on top of a hyperactive 3 year old consumes a lot of your time, especially when working 50 to 60 hours a week. For those of you still checking on the blog regularly or how want to keep up with it without having to check it every day, I'd highly recommend subscribing at this point. You can either do it through Google's follow blog feature (which to be honest is my prefered method because it lets me know how many people are reading still) or via RSS/Atom, which you can follow by clicking here (RSS) or here (Atom). I've also added handy subscribe by email buttons to the side under followers, and a widget for subscribing via RSS. Are you going "wha?" when I say RSS? You're in luck, because I've gone ahead and Googled something for you, which you can find here. Why should you subscribe? Well, I'd imagine with the event that's going to be happening soon that I will have even less time to update the blog. By subscribing, you get notified when I do update, rather than have to check constantly. *edit* in the process, I forgot to actually change the feed, so if you clicked on anything but the text links above, you got the old feed. This has been rectified, so you should be good to go now.

 Lillian's at home experience has been interesting. Kathryn and I always expected her to be quiet due to being in the hospital for such a long time. However, it looks like our expectations were for naught. Lillian is just as, and in many cases louder and more vocal than Annabelle was at a comparable age.
If you know Annabelle, you know this is no small feat on Lillian's part, and means that any hopes of having quiet time are now lost for what feels like eternity. But if Lillian is even a quarter as funny and quirky as Annabelle is, it will be well worth it.

Even though we couldn't go out for Easter, we still got the girls dressed up in their best dresses. Getting a picture of them both looking at the Camera is another proposition though. I've settled for at least one kid in the picture looking and smiling/not making a horrendous face.

Annabelle decided Lillian's exersaucer needed a couple stuffed animals
In terms of actual medical updates: Lillian continues to have massive issues feeding and is regressing at this point. Even before the transplant she would eat a little, but now she refuses to take any formula by mouth. We have to gravity bolus every ounce she takes which gets old since she's also refusing food of just about any type, and pukes what little she does accept. My gut feeling is this is related to Cyclosporine induced nausea, about which we have little we can do.

On other fronts, our most recent clinic appointment (last Wednesday) revealed a potential issue. While Kathryn's recollection of the issue is inconsistent to say the least, it appeared that Lillian's left ventricle was shrinking. You might remember that this is the ventricle that has caused us so many issues in the first place, so we are puzzled by that development. In terms of action, there's not much we can do now except to watch it, and it will be re-evaluated in a couple hours at her clinic appointment today. Further updates when I have them (hopefully not almost a month this time!)

A Quick Note on the Backend

I'm changing some things on the back end to make it easier for people to keep up to date on the blog. Part of that means changing the feed address, so if you're currently subscribed via RSS/Atom, you should come to the main blog page to update your subscription. If you don't know what RSS/Atom means, don't worry, I haven't changed anything for you. You can also follow the new feed by clicking here.