Update

Well, Faith had all of her tests and the results are in. First, the good news: her upper GI/small bowel follow-through didn't show any anatomical issues, no bowel dilation or anything else! Also, the test went faster than it ever has before- we started at about 8:45 and were finished by 1:30! And "finished" had a totally new meaning this time too, because we actually were able to see the barium in her colon, a point that I don't think we have EVER gotten to before. Faith didn't have any issues clearing the barium out, either, which had been a worry of mine since in the past she has gotten almost completely stopped up after one of these tests.

Faith's stomach full of barium, with no reflux into her esophagus!

Lots of barium making its way through her twisty guts

A perfect patient, with white lips from her tasty barium "milkshake"

Now, the bad news: Faith's VUR is not resolved, and has not improved at all over the past year, in fact they were able to see better on one side so technically the grade was increased on that side after this test. She has grade 2 reflux on one side and grade 3 on the other. We had talked to her before the test and let her know that surgery was a possibility, so she wasn't too upset, although I'm not positive she understands what exactly it entails... We've talked more about it since we found out it was going to happen, and are doing our best to prepare her. This will be the first surgery that she will be old enough to really understand what is going on, so we really want to help her know what to expect. The past few times she's had any procedures, we've gone out of our way to clearly explain what was going to happen and what she needed to do, and the medical staff has said each time that they wished all of their patients were like her, so I think that approach is working well. I think it's also given her more ownership of her body, her history, and her health, which seems to be coming at the perfect time, since other kids her age have had reasons recently to ask about her scars and why she is going to have surgery.
Her surgery will be on June 10, and will be at the "other" hospital for children in Denver. As silly as it sounds, I think I am more nervous about her having surgery at a different hospital with a doctor who hardly knows her than I am about her actually having surgery! This will be her 11th trip to the OR (not all of those were major surgeries, but all involved general anesthesia), but the last 4 or 5 of those were with Dr. Puder in Boston, and the ones before those were all with the same team of surgeons during her NICU stay...
Every hospital does things differently, so this will be a first-time experience all over again for all of us, we won't be feeling like "veteran" surgery parents this time around. Pair that with the fact that the doctor doing the surgery has met her all of twice for a grand total of about 10-15 minutes and seems to have no understanding of her complicated history... and then he told us we'd "have to remind him" that Faith is allergic to PDS sutures because those are what he usually uses... Needless to say I am feeling pretty nervous about trusting her to this doctor. It's kind of hard to explain I think, or hard for people who haven't been in our shoes to understand why it makes a difference, but the surgeons who took care of her in the NICU did every surgery she had from the very first one when she was just a few hours old to the last one the week before she got out. And Dr. Puder so obviously cares deeply about his special patients that it was incredibly easy to hand her over to him for surgery... This guy makes me feel like I need to write her list of allergies in Sharpie across her belly, since apparently they won't be listed on a hospital bracelet or else they just won't check the bracelet...
I've gotten a bit of a lesson from God through all if this, too. Last year when Faith was diagnosed with the VUR and they said they would put her on antibiotics for a year and watch her, I felt very strongly that the antibiotics were a bad idea and we should probably just do the surgery, but I brushed that feeling aside because I didn't want her to have to go through another surgery. Then, when the antibiotics did what I thought they would and totally messed up her gut flora, I thought again that we should just do the surgery and get it over with, but again I brushed it off... Now I am kicking myself for not listening to what I apparently knew all along was the solution, and praying that Faith won't have any permanent damage as a result of my stubbornness. Dave and I are afraid that she's been having kidney infections all this time, looking back now and knowing that the VUR was not resolved... A lot of her "mystery" symptoms would fit into that possibility (the random unexplained throwing up, the sudden onset of bedwetting when she NEVER wet the bed before, her complaints of pain in areas that didn't make sense for gut stuff...).

Faith "driving" the tractor on her field trip to the dairy farm today

At this point, the surgery is pretty much guaranteed to happen, because as far as we know they won't be doing a pre-op VCUG. So, rather than asking for prayers for healing, we are asking for people to pray that the surgery and recovery will go smoothly- as well as or better than they expect it to go, and that she won't have any lasting damage or negative effects from the VUR or the surgery. She hasn't had many things go as easily or smoothly as expected in the past, but we firmly believe in the power of prayer, and would love prayers from anyone who might read this!

It's been awhile...

I can't believe I haven't posted since shortly after Faith turned 3! Such is life with three kids, I suppose... not a whole lot of spare time.

My favorite shot from the family pics we had taken this past fall- it showcases the personalities of the kids pretty perfectly! Faith strikes this "model" pose in a lot of pictures...

Faith is now 4 1/2, and almost done with preschool. She is "normal" in virtually every way, doing everything other kids her age can do, and incredibly smart- must be all of the fish oil! She will be too young by about a month to start kindergarten in the fall, but she is definitely ready, so I am planning to get around the district's cutoff by homeschooling her for kindergarten this fall and having her test into first grade the following year.
Preschool has been a bit of a challenge for her immune system. We weren't expecting it to be quite as bad as it has been, since Noah was in kindergarten the year before and presumably brought home a lot of germs, and it was never an issue... Starting out the year though I think she was sick at least twice a month, which is a pretty big deal when she only goes 2 days a week! Somehow she avoided getting the flu, in spite of Noah and I both having it, so that was definitely a blessing. It seems like every little cold she gets lately results in a week of vomiting, so I hate to think what the flu would have done to her!

Faith's first day of school!

In my last post I mentioned that she was going to be tested for vesicoureteral reflux. She had that test (and it wasn't traumatic at all- she didn't cry or anything!), and it turns out she does indeed have VUR. We took the "wait-and-see" approach, where they put her on a daily low-dose prophylactic antibiotic (Bactrim) to prevent UTI's and then wait a year and do the test again. She'll be having that follow-up test done on the 15th, and we are praying it shows that the issue has resolved on its own. If it hasn't, she will be having surgery to fix it. There is a less invasive procedure they can do, where they inject a kind of gel into the spot where the ureter enters the bladder, to give it a sort of "faux-valve" so that the urine can't back up, but with as many strange reactions as she has had in the past to random unexpected things, we don't like the idea of putting anything into her body that couldn't be taken back out if needed. So, if she needs it, she'll just have the regular old, unfortunately more invasive, surgical procedure to fix it. Like I said, we're praying we don't have to consider either of those options. Selah actually had only a 20% chance of growing out of her VUR by the time she was 5 years old (because of the grade/severity she had), yet miraculously when they did the follow-up test on her (6 months after she was diagnosed) hers was completely resolved! Hopefully Faith will follow suit.

The daily antibiotic idea didn't last very long, because it caused her to have bacterial overgrowth within a month or so of starting it... so we stopped that and treated the bacterial overgrowth. Since then, she has been cycling with the bacterial overgrowth about every 6 weeks, and we've been treating it when it comes back with an antibiotic called Alinia and a probiotic called Florastor. That combo works really well, but the probiotics are expensive and not covered by our insurance at all.
We can't figure out why the bacterial overgrowth continues to come back in spite of treatment... it goes away every time we treat it, but still pretty much every six weeks or so, it comes back again. Faith has stumped the docs again too, because consistently the week before the bacterial overgrowth comes back, she has 2 or 3 random incidents of "sleep-vomiting", where she will cough once or twice and wake up covered in throw-up.  Then the next week comes all of the typical bacterial overgrowth symptoms- the excessive (and stinky!) gassiness, diarrhea, and stomach pain. No one seems to be able to understand why she is throwing up in her sleep for no apparent reason, and they don't think it's connected to the bacterial overgrowth (but the timing seems awfully suspicious to me...).

Picking out a pumpkin on her field trip to the farm

We saw her GI doctor this past Monday, and we've decided together that it's time to see if we can root out the cause of the recurrent bacterial overgrowth. Next Wednesday, she's going to be having a UGI with small bowel follow-through to see if there is an anatomical issue (like her bowel being dilated again, or something like that), or if she's having motility issues again. Funny little aside- when the scheduling person called me, she said, "It will probably take around 4 hours," to prepare me to be there awhile or whatever... My response to her- "Four hours would be awesome! I'm pretty sure the last one took about 20..."
While I hope that she doesn't have an anatomical (aka potentially surgical) issue, I would love to have a definite cause so that we can come up with a solution. It is so hard to deal with, because she is getting to an age where it really affects her emotionally. I hate seeing her sick, and it seems like lately she isn't feeling well way too often. The worst is when she does her "sleep-vomiting" and apologizes to Dave and I for throwing up in her bed, and cries and says how much she hates throwing up. I have always been thankful that she was too young to remember everything she's been through, and now she isn't too young anymore and it hurts me to see her suffer. Still, she is an amazing testament to God's healing power... I cannot believe that the rambunctious little tomboy princess constantly asking to ride her bike or go to school is the same baby I spent so many hours blogging about four years ago!

Faith's school picture from the fall- a little "before & after"... it makes me cry every time I look at it!

It occurred to me as I was looking over the blog to see when the last time was that I had posted that I never shared the story of Selah's miracle healing last October. We have always been firm believers in the power of prayer; there are too many aspects of Faith's story that can only be explained as miracles and answers to prayer for us not to believe it works! But ever since Selah was healed, our faith has been even more concrete.
When Selah was about ten weeks old, she got a fever and I took her to the ER. Turns out she had a UTI (which was the start down the road to getting her and Faith diagnosed with VUR), but the very first thing the ER doc asked when she came into the room was, "Has anyone ever said anything about her head?" No one had ever said a word, although we had noticed that it had kind of a funny shape... The doc recommended that we follow up with a neurosurgeon, to rule out a condition called craniosynostosis, where the plates of the skull fuse together prematurely. We took her to the neurosurgeons at Children's, where they basically took one look at her and positively diagnosed her as having sagittal cranio. They wanted to wait until she was 6 months old or so to do anything about it, which didn't seem right to me, so I took her to a neurosurgeon at the other pediatric hospital in Denver for a second opinion.
In the meantime between appointments, I found a great organization, Cranio Care Bears, that supports families affected by craniosynostosis, and it turns out that one of the founders lives about 20 miles from us. We met up, and she actually came along to the second opinion appointment. She has seen a lot of cranio babies' heads, just because of what she does, and she also agreed that Selah had sagittal cranio. The second opinion doc believed Selah had cranio too, and we scheduled a CT to confirm the diagnosis.
The whole experience of having a second child with a 1 in 2500 birth defect had majorly shaken my faith and I was feeling pretty depressed about all of it. On top of that I was having a pretty hard time adjusting to having three kids, and then Dave left to go hunting. I went to church that Sunday and found our pastor afterwards, crying about how it wasn't fair, and when was it not going to be our turn for all of the bad stuff, etc, and he offered to pray. Selah was in a sling on my chest, fine and dandy, her normal mellow self, and then he put his hand on her head and started praying. She screamed, like she was hurt, until he finished praying, and then she was fine again. On the way out of church, a friend saw me and asked what was wrong, and also offered to pray for Selah. The SAME THING happened- Selah was fine, but as soon as the friend started praying and put her hand on Selah's head, she started screaming. Then she finished praying and Selah was fine again.
A few days later, I took Selah down to the hospital for her CT, and an appointment with the neurosurgeon to discuss the results. She had the CT scan, and then the neurosurgeon sat down with me in front of the computer and showed me every single suture (the joints between the plates in the skull) in Selah's head. Every single suture was open, not a single one was fused! We believe without a doubt that this was a miracle.
I could say I will update after the tests Faith has coming up, but I'm not sure anyone will believe me... I will definitely try though! :)