What made the difference?

Everyone has asked us this question about Whit, and honestly I'm not entirely sure that I know. It was a combination of things. We tried literally everything under the sun, so it's hard to pin-point it. But here's a few of the things that helped:

1. Probiotics! We saw a HUGE improvement when we started giving Whit probiotics. We had read that they helped reflux, and decided to give it a shot once our doctor told us that they couldn't hurt her. He wasn't real enthused about it, and didn't think it would help at all--and to be honest, I don't think he ever believed us when we told him the difference they made. We've been through a few different doctors now, and NONE of them have liked the idea of probiotics, but ALL of them have admitted that they can't hurt you. We noticed an immediate difference in Whitley, and even put it to the test by stopping the probiotics at times. Each time we stopped them, Whit would have terrible pain again. There isn't alot of research out there, but a lot of people agree that probiotics can help a number of things, from reflux, to acne, to allergies. We are definite believers! We now take them ourselves, and even give them to our other kids to help prevent sickness. Check out www.kidsessentials.com to see the immunity drinks we give our kids.

2. Sleep. For the first 4 months, Whit had never slept more than about 30 minutes at a time because of her pain. Even when she was completely exhausted, the pain would not allow her to sleep. And then once she finally did start sleeping, the doctors made us wake her up every 1-2 hours to feed her (they were convinced I was starving her since she wasn't gaining weight). It was a double-edged sword for both Whit and I. It made us both grumpy and caused us both to not eat well. Once I began to let her sleep longer, the other things started to fall into place. And to this day, Whit is SO much happier when she sleeps for a long time. She just needs her sleep!!

3. Going against the doctors. It sounds cliche, but doctors REALLY do not know everything! Boy, have I learned that!! I never felt good about what the doctors were asking of, and telling us. My motherly instincts kept telling me that they were wrong. When I decided that I had tried it THEIR way and it was time to do it MY way, things got better. For instance, they kept wanting me to feed Whit a lot at one time to get extra calories in her. This always backfired since she would just reflux it all and be in severe pain afterward. It also lead to her developing a feeding aversion because of the pain she felt every time she ate. It wasn't until I went against the doctors and gave her smaller amounts more often (as I had told them all along)
that she finally began to gain weight and not hurt. So trust your instincts, not the doctors!

4. Getting a new doctor. I felt trapped to stay with Whit's NICU doctors, since there aren't a lot of doctors who deal with preemies. Looking back, I really feel that her NICU docs were too close to the situation. They think one preemie is the same as all preemies. Yet, in the end they told us:"Whitley is not a normal preemie, and definitely not a normal preemie with reflux". She is the exception that they hadn't planned on, and didn't know how to deal with. They continually pressured me to put her back in the hospital, and threatened me repeatedly with sending child services in to monitor our home. It's was EXTREMELY stressful for both Whit and I. Once we found a new doctor, that stress was gone, and Whit started doing better and better.

5. Rice cereal/Solids. The first time we saw our new doc in March, he had us immediately start adding cereal to all of Whit's bottles. It instantly made a difference! And it gave her extra calories too. ..allowing her to gain weight w/o refluxing. A win-win! Why our old doctors hadn't ever thought of that (in over 4 months), I'm not quite sure.

6. Last, but definitely not least: Prayers! If I could just name one thing, this would be it! We could not have made without all of the prayers on our behalf! We felt every one of them! So thank you!!

The last 8-9 months have been extremely tough, but we wouldn't change it! We have learned SO much!! And as we look back, we can see how we were taught and prepared...line upon line and precept upon precept, to make it through this trial. We have been expanded and enlarged, and have gained SO much! How can we not be grateful?! {And hopefully I'll be able to let my anger at the doctors go soon!}

Whitley's blessing

FINALLY....

6 months old, and 11 lbs

Out of hiding....

We took Whitley to church for the first time today....we're officially out of hiding!

Parker's 1st weld

Brett's parents had an old trampoline that just needed a few welds. So my brother, Mike, came and fixed it up for us. Mike even took time to teach Parker how to weld.....he LOVED it!!! And now all the kids are loving their new "old" trampoline!

Over the last 5 months, Whitley has gone from this:

this:

and this:

to this:

PROGRESS....slow and steady!

Logan turns 2

It's hard to believe that two years ago today, I was in Makati Med hospital in Manila with Logan (and more than a few cockroaches). Time flies when you're busy! Here's a few pics of his day:

The theme seemed to be: TRUCKS, TRUCKS, and even more TRUCKS (and it wasn't even planned). Logan ended up with about 5 new trucks, a truck book, and a water table to drive trucks on! What more could a 2 year old want?!?

Mystery Diagnosis

The good news: Whitley didn't have to have surgery.
The bad news: It feels like we're starting from the beginning again.

We expected something drastically different than what we got at Primary Children's. It was a long, difficult day with what feels like very little progress.

We were told not to let Whit eat anything after Noon, and our appointment wasn't until 2pm (for what we thought would be another swallow test). We arrived at 1:30, hoping they could get her in early so she wouldn't have to wait so long to eat. Two hours of not eating is asking A LOT of Whit (she nurses constantly, and has never gone for 2 hours w/o eating)! However, we sat in a waiting room filled with kids (another huge concern with RSV) until nearly 3pm....with Whit screaming of hunger nearly the entire time.

They finally took us to a room where we waited another 30 minutes for the doctor. When he came in, Whit was screaming her little heart out, and we could barely hear anything he said. They couldn't tell anything from the results we had brought them, so they needed to re-do the test---that's what WE thought we were there for in the first place. Apparently not. And to make matters worse, our local doctor never made the appointment for us to have the test re-done at radiology. So at this point we had to go to another floor, register with the hospital, and then "see if radiology could squeeze us in". Did I mention this was the day after a major holiday....EVERYONE was at the hospital for tests that day!

Fast forward to nearly 5pm....still waiting in radiology hours later-- for a test that only takes 10 minutes to perform---with a baby who is so exhausted from crying in hunger for almost 5 hours that she's finally fallen asleep. That's when they called us back...just so we could wake her up for a miserable test that would soon have her painfully refluxing and throwing up barium all over. It was pretty awful.

After the test, we trucked back up to the GI docs office to wait for the results....where FINALLY I was able to feed Whitley. The doctor came in and immediately called our local doctor w/o telling us anything. We found out the results by listening to his one-sided conversation as he told them to Whit's doctor. Not very nice at all, if you ask me!! Basically, we found out that Whit's stomach isn't twisted. However, her reflux is so severe that it is making her stomach empty extremely slowly and causing problems with her digestion. So now we have to add another medicine to the bunch, that is supposed to help the food move through better. It is pretty much our last option as far as medicines go.....all the doctors agree that we have tried literally EVERYTHING else. The medicine will not help her reflux at all, but hopefully it will help Whit to gain some weight so they don't put her back in the hospital!

I am so frustrated with the doctors. It feels like we're on an episode of Mystery Diagnosis...and no one can get it right!

Eating crow...

That's what Whit's doctor is eating for dinner tonight.

He called this morning to let me know that her other doctor had given him the test results, and that he was "shocked" that they were abnormal. He thought the test would be completely normal...in fact, his exact words this morning were "I was 100% positive the test WOULD BE NORMAL...I'm intrigued". Thanks, but being intrigued does not help my daughter any! If he'd been a little more intrigued about a month ago, maybe Whit would be better by now! Can ya tell I'm STILL angry?! I need to let it go...but for some reason, I can't yet.

At any rate, we're headed to Primary Children's tomorrow--most likely for immediate surgery. In fact, the surgeon said that the latest he wanted to see us was tomorrow. He really wanted us there sooner. Apparently, if Whit's intestines close off any more it can become an emergency situation.

Tomorrow they will repeat the test that they did here, and then admit her for surgery if the test shows the same thing they saw here. The doctor ended the call by saying, "This is what needs to happen...she needs to be at Primary Children's...it's out of our hands now." And thank goodness for that!

We're not sure how many days we'll be gone, or what the surgery will be like for Whit. It's hard to leave our other kids w/o knowing when we'll be back. But anything is worth it to help Whit! I can't say that I'm not worried, but it feels good to finally know what we need to do to get Whit better. Knowing makes all the difference! Now it's time to act. It'll all work out...I have to have faith in that!

Vindication....

Sweet Vindication!! That's what I'm feeling right now!

We had the swallow-test today. Whit had to drink a bottle of barium, and they strapped her to a board and watched the barium as it emptied through her system. I didn't go to the test...Brett took Whit alone. I needed to stay with the other kids...and didn't think I could bear to watch her go through that. She refluxed terribly, and Brett could tell there was something wrong. The radiologist asked him to bring her back again in a few hours so they could take more pictures as it was emptying out of her system. When he went back, he could see that it was barely leaking out into her intestines. After probing the radiologist, he told Brett there was a problem.

The doctor got the results from the radiologist and called us later that night. Whit not only has a REALLY bad case of reflux, but she ALSO has a mal-rotation of the muscle between her stomach and her intestines (I can't remember the name of it)--meaning it's completely twisted and very little can get through.

Here's the funny (well, not really funny...actually infuriating) part: This is the EXACT thing I asked the doctor about over a month ago! I had researched and researched all of Whit's symptoms and came up with 3 things that could be causing her so much pain and stunted growth 1) a hiatal hernia, 2) a stricture (blockage) of some sort, and 3) an emptying problem with her stomach. I went to the doctor with my theories and asked him if she could have any of these, and could we test for them P..L..E..A..S..E?! We were to the point of doing the tests when that darn speech pathologist got involved and convinced the doc that we WERE starving our baby. That's when any other diagnosis' were scraped and I was told that CPS (child protective service) "could" get involved. At that point, I said "see ya" (well, not quite that nice of words) to the pathologist--which angered the doctor and stopped all forward progress.

So basically, we think Whit has a BLOCKAGE which is causing an EMPTYING problem in her stomach. Because the muscle below her stomach is twisted, the milk stays in her stomach for an abnormally LONG period of time. When we force bottle after bottle down her (as the doctors demanded) to get her to gain weight, it gets stuck and therefore comes out the only place it can--up through her mouth as reflux--causing even more pain, and possibly leading to a hole in her esophagus. If the doctors would have listened to me a month ago, we would have figured all this out by now and Whit wouldn't be hurting anymore. To say that I am angry is a HUGE understatement!

When Brett asked the doctor if all of this could cause her not to grow he simply said, "possibly". Possibly!? Are you kidding me?? Funny....he asked the radiologist the same thing right after the test and got a resounding "Yes!"

Apparently it is a big deal because they want us at Primary Children's like yesterday! They said if we would have been able to have the test done on Thursday, we would be at Primary Children's having surgery on Friday. But now, because it's the weekend (and a long weekend at that), we have to wait until Tuesday to go down for more tests and then surgery.

It's a little freakish knowing that our little 6 pounder is going to have surgery in a few days, but knowing it needs to be done is half the battle. I feel like we've been through war with the doctors. Surgery can't be any worse than what we've already been through to get to this point. And honestly, it feels good just to have some answers!

The plot thickens

Today we took Whit to a new doc. He's in the same office as the other doc, and was also one of Whit's NICU docs. We really liked him in the NICU, but today he was not even remotely nice or understanding. He pretty much discounted everything we said. He told us that he should admit her to the hospital today! I told him we wanted to do a swallow test first (which I have been begging for), to see if there are other things going on with her digestion. So he agreed to do that tomorrow. Then he wants to admit her to the hospital on Monday(assuming the test comes back normal--and he does!), so that nurses can monitor every ounce Whit takes in and watch me nurse every 2 hours (like I need that stress added to the boat-load they're already causing me). I have nursed 4 other kids--I can't believe this is what I have to do to get them to believe that I AM giving her enough milk. They just don't trust me.

The doctor was with us for over an hour...trying to get us to understand that we ARE starving Whitley. It makes me so angry!! He just thinks that she needs to take in a bigger amount. I told him that when she does she refluxs terribly and hurts for hours afterward. And that she's a happy content baby now. What good does it do to try to force milk down her when she just spits it back up? He said, "You can either have a happy starving baby, or you can have a well-feed fussy baby, which would you choose?" Seriously?! I can't believe he said that! Then he throws around all these percentages about how 90% of the time it is a calorie issue and not any other digestive issue--and that by looking at her, it's purely a calorie issue. Like you can tell that by just looking at her!!

He said that right now he doesn't feel like we are purposefully making decisions to not give our baby enough, but that if it gets to the point that "they" (doctors, pathologist) feel like we are making decisions that compromise her health that they WILL take action and CPS (child protective serviceS) could get involved! Ugh, I am so angry and stressed. Do they honestly think I would starve my baby?? I KNOW there are other things going on, and so far they have done NOTHING to try to find them. Tomorrow will be the first test, and I have been asking for it for over a month. I feel like everyone in that office just sees me as this horrible mom who bugged them forever, and then told them to leave me alone--which I did. But I was trying to get answers--and they never gave me any. No doctor yet has been able to tell me why Whit can have 6-8 wet diapers a day and still be starving!! They can't answer it because it doesn't make sense to them...Whit doesn't make sense to them. They just can't admit that. I wish so bad that there was a specialist here so that we could just bypass all of these wacko doctors who think they know everything! The doctor actually told me that "there are kids who would die w/o bottles, and Whit could be one of those" (in other words, stop nursing). I just feel like no one is listening to me.

And there's more. Whit has had this indentation on her neck since she was born. We've asked the docs about it before, but no one seemed to care much about it. It has been leaking a clear liquid for awhile. It was leaking in the doctors office and Brett showed it to him. He said it's a bronchial cleft cyst. And boy is it more than we bargained for!! It's almost more of a worry than her weight...although weight takes precedence right now. Basically, it's a spot on her body that is just open. Instead of skin and other tissue growing where it should, it just didn't grow over this part. So it's an open sore that can get very infected. And they have to do surgery to fix it. The problem is that they can't just cover it over. They have to go in and explore and find the spot inside her body where it didn't grow together right, and repair it there. And apparently sometimes it can take 5 + surgeries to find the exact spot. They may wait until she's a year to do it, or they may decide the infection is too much of a risk and do it now. This all just feels like so much to handle. The doctor was telling us all of this, and telling us about her going to the hospital, and wasn't even remotely caring or sympathetic. I just feel so betrayed by the whole system here. It has been 3 years (since Logan) of this kind of stuff for us. I am just so tired...emotionally, physically, and spiritually.

I feel like everything is spiraling out of control. This is definitely the hardest thing I've ever had to face. I feel attacked, ganged-up on, punched in the stomach--you name it, I'm feeling it. And poor little Whit is at the mercy of all of it. I wish the doctors could see that this isn't about me and what I think...it's about whats really happening with Whit---but I'm the one who knows her the best---If they'd just listen!!!

Runaway coaster

I haven't posted in quite some time, partly because I've been too busy with our newest addition, and partly because I just didn't know what to say. I think everyone assumes that once you bring your baby home from the NICU that life is great and everything is normal. I admit that I was once one of those people....until it happened to me. "Normal" is not a word that I know the definition of anymore. And it's hard to pretend things are okay when they're really not. So after months of thinking about it, I've decided that I'm not going to pretend anymore. As my friend in Manila would say (you know who you are!), "It is what it is."

THIS IS what I'm really feeling:
Having a preemie is like getting on your first big roller coaster ride as a kid...only it turns out to be a runaway coaster. You bought the ticket and jumped into the seat, but something went wrong and now there's no stopping it. You have no other option but to hold on tight and "choose" (because it IS a choice) to white-knuckle your way through the very high highs and extremely low lows, and all of the twists and turns in between. You try to act brave, so that no one knows how terrified you really are. But at times you're so scared and unsure of yourself that you want to just close your eyes--thinking that will make it easier. You know in your head that one day you'll look back and be glad that you conquered such a huge roller coaster. But for now, you just have to find a way to make it through the next big turn!

That's pretty much the way I'm feeling. The hills seem to just get higher and higher for us lately. I feel like we've been through the ringer with our little Whitley. It makes me so sad that she has to go through so much. In a nutshell, Whit has the worst reflux possible. Every baby has some reflux, but Whit is what they call "sick with reflux". This means that is affects EVERYTHING....eating, sleeping, growing, etc. For the first 2 months after bringing her home, Whit screamed in pain for about 22 hours/day. We've been on 6 different meds and supplementing with 3 different formulas to try to get the reflux under control. We've made some progress, but she still is not growing. She's nearly 3 months old and hasn't even gained 2 lbs since we brought her home in November. She is what they call "failing to thrive". Despite all of this, lately she has been a happy and content baby. It makes no sense to us, or to the doctors. They've called her a "mystery baby" and "not a normal preemie". I feel in my heart that there are underlying digestive issues, but I can't seem to get the doctors to listen to me. I ask them questions about why things are happening, and they don't have any answers--but they don't seem to want to do anything to find out either. I'm frustrated that we're in such a small town with no specialist nearby. I feel trapped.

Along with everything else, we also have a speech pathologist nazi (pardon the term, but that's what she is) on our backs. After seeing Whit for one hour, she thinks she knows what's going on with her--when the doctor and I have been working for months to try to get to the bottom of it. She was causing WAY more problems and stress than she was helping. So I told her not to come back anymore. I think that made the doctor angry.

I'm frustrated by a medical community who spouts facts and figures instead of listening to what is really happening and trying to get to the bottom of it. They keeps saying "in most cases...", but my daughter is NOT like most cases--they've already told us that. We've been threatened on more than one occasion with them putting her back in the hospital and giving her a feeding tube. I know for a fact that she IS getting enough milk. There is something else causing all of this. They seem to want to be right more than they want to find out what is really going on. The doctor did admit that he thinks they sent Whitley home from the NICU too early, and I would agree.

I know this is happening for a reason...a reason I may never know in this life. And I know I have to keep holding on for Whit. I just gotta make it around the next big turn.....