Whit's Surgery Part 1

Let me preface this by saying that this entry is for our journal...so there are probably more details than anyone else really cares to know. But I know I'll want the details for Whit someday.

Whit has had a hole in her neck since she was born. We discovered it right after we brought her home from the NICU. We thought it was odd, and noticed it often leaked a clear bodily fluid. We informed her doctors about it and were told that she would need surgery to fix it once she turned a year old. We saw an ENT who finally gave us a term for it--"Right Brachial Cleft Fistula", and were instructed to keep it clean so it didn't get infected until we could have the surgery done at Primary Children's (our local hospital again, was just not equipped for it). Apparently, brachial cleft fistulas are pretty rare. Whit's doctor was even giddy about it--saying, "You know these are rare, right? We only read about these in textbooks. Whitley is the only case in our E.N.T.I.R.E. practice." Thanks a lot, Doc...that makes me feel better!

We saw the specialist at Primary Children's on Dec. 23rd, who confirmed that it was a very rare brachial cleft fistula. He explained it as basically a tunnel that usually starts at the tonsil, voice box, or inner ear. When she was forming in the womb, a flap of tissue got folded over and never sealed up properly. That created a hole that continued to grow and form this tunnel out to her neck where it is leaking bodily fluid. Because the mouth is so dirty, there is a high risk of infection. And because Whit's leaks, that increases the risk. If the tunnel gets infected before it is removed, it makes complete removal nearly impossible....and it could come back. Infection in that area is also extremely hard to treat. So there is an urgency in having surgery once one of these are found.

The doctor also explained that he wouldn't be able to know where the tunnel leads until he's actually doing the surgery. There are no tests to tell how long the tunnel is or where it goes. And some surgeries are more difficult and have worse complications--according to where the tunnel ends up. So we would be going into it blind--with little information about how it should turn out. That was scary for me, because there were possibilities of paralysis in the shoulders or face as a result. That was pretty drastic for me. Whit has already been through so much in her life, and I hated the thought of her enduring any more.

The doctor asked us if we wanted some time to think about it before we made the decision. But Brett and I both agreed that we had known about this for a long time, and knew that surgery was pretty much inevitable. But even then, we were shocked when the surgery was scheduled for the following month, on January 25th! We knew Whit needed surgery, but THAT fast!?! We were a little (okay, a lot) shocked! They also informed us that they could have done the surgery when she was only 3 months old, we didn't need to wait until she was a year like we were told....waiting only increases the chances of it getting infected, which would cause major problems....thanks again, local doctors!

Getting back on the horse

Saying it's been awhile is a huge understatement!

I was ready to give up on the whole blog thing. In fact, I did! Blogging, was a great way for us to keep in touch with everyone while we were living overseas, but it lost it's luster once we moved back to the States. Add another baby (a very premature and medically needy baby) into the mix, and well, blogging ends up at the bottom of the list.

But now that things with Whitley are finally winding down and I'm semi-adjusted to being back in the States (it only took 2+ years!), I guess it's time to give it another try. Purely for the sake of journaling!

So here we go again......

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!