Thursday, November 18, 2010

More than I can handle

Have you ever been so frustrated that you lost your voice? I'm not talking about our talking voice. I'm talking about the voice that is able to tell the story or recount the events. The voice that works when you are able to keep it all together.

I lost mine today. It's the second time this has happened, and both times involved Lily. The first time was the day of my amnio, when the genetic counselor asked me if I knew anything about Trisomy 18. My voice failed me, and all I could do was cry. Luckily, Dave, my knight in shining armor, was there to answer for me. And, luckily, he was willing to be there for me today, this second time that I've lost my voice.

I've been dealing with vomit for two weeks now, and today, I think the bending from all of the weight that comes with a baby who has Trisomy 18 broke me. It's not so much the vomit itself or having to do laundry every day or any one piece of this parcel. It's the complete package, plus the worry that comes along with it, plus the feeling that I'm not being listened to when my heart tells me we need to get to the bottom of this, plus the uncertainty. I'm afraid to go places, worrying that Lily might make a mess all over the place.

It all started after Lily's g-tube got placed, but I can't say the g-tube is the culprit. (Can't rule it out, either.) And it really didn't begin until the first time Lily got sick after the g-tube got placed. I think I've posted about it before, but she either sneezes or coughs and then she vomits. I'm not talking about a little dribbling down her mouth. I'm talking about projectile. I'm talking about 1 to 4 or 5 ounces being lost each time.

But it doesn't happen consistently, which is probably just as frustrating, and it doesn't necessarily happen while I'm feeding her (although it does at times). Sometimes it happens 15 to 30 minutes after I feed her; other times, it occurs 2 to 3 hours later. But it always happens with a sneeze or a cough. The doctor has prescribed an antibiotic, thinking that maybe she has a sinus infection or ear infection or UTI--not sure if vomiting would be caused by any or all of the above--but Lily's ear canals are too small to tell if she has an ear infection. She does sound a little gurgly sometimes, and her undiagnosed sleep apnea has been worse the past few days, so sinuses could be causing that. Her urine has a peculiar smell, which leads me to believe she might have a UTI, but it seems to me as if it's all speculation. That's not enough for me. I want answers.

So the vomiting started with that cold that came some time after the g-tube, and it's been pretty consistent that whenever Lily has a cold, this is what we can expect. Until two weeks ago. That's when the nutritionist suggested that we up her intake 1/2 an ounce at each feeding for a week and then another 1/2 ounce after that so she will be getting 6 ounces instead of 5. Last night, though, thinking that maybe 6 ounces is just too much for her right now, I lowered the dose to about 4 1/2. I awoke at one this morning to hard crying and vomit all over Lily and in her crib. This is the third or fourth night in a row that she's thrown up in her crib. Yesterday morning, she threw up while the PT was here, and today she's thrown up twice. So maybe the amount wasn't too much.

I'm so tired of all of this. Like I said, I want answers, or at least suggestions. Dave tried to call the doctor, but had to leave a message and the call was never returned. (I could not have done it. I cried just telling him all about it.)

The only ball I feel I have in my hands right now is to change her formula, which we did this evening. So far, so good, so maybe there's some kind of intolerance to what she's been drinking. I don't want to sound too pessimistic here, but I'm not holding my breath because the vomitting has been so inconsistent. It doesn't happen every time she gets fed. Is this one of those times?

The good news is that Lily doesn't seem to be in pain. After each episode, she cries or fusses (heck, I would too), but she gets over it and then wants to play.

There just seems to be so many possibilities:
allergy or sensitivity?
something wrong with her stomach emptying?
some ear, nose, throat issue?
could adnoids or tonsils cause something like this--I'm relating only because of the apnea?

Gosh, if anyone out there has any suggestions or a related experience, I could really, REALLY use a few pointers. It's frustrating to me, but I can only imagine what it's putting Lily through.

Enough venting for the night. I feel better, but I think I still need Dave to be my voice with the doctors. Right now, I'm afraid I'll just come across as some crazy woman speculating anything and everything that could be wrong. And something tells me that this is one time when I need to keep my cool.


  1. Oh I can so relate to what you're going through. It's exactly like you've described for Vera: The on/off vomitting starting with a cough or sneeze.

    I know you want answers, but actually you've already hit on a some of them. In Vera's case its a combi of a few things you're mentioned:

    1) allergy or sensitivity? We had so much vomitting on Pediasure. Too rich. We changed to a hypoallergenic formula, Nan HA with no vomitting now.

    2) something wrong with her stomach emptying? This is true too. Cos they are less active, gut low tone, moves slowly down.

    3) congestion? This is true for Vera. The congestion leads to the cough/sneeze and activates the vomit.

    4) could adnoids or tonsils cause something like this-- YES. Do get an ENT to check Lily's with a larygoscope. After the surgery, the (touch wood) breathing is so much better and no more coughing/gagging.

    5) reflux? This is true as well. She probably does have. Do ask your GI for a barium test or PH impedence test to confirm. You can manage this either through surgery or positioning.

    I know how it feels "more than you can handle"...hope lily's issues get sorted before your delivery.

    take care!

  2. The prayer warriors are on the job! Wisdom for the docs to determine the cause and resolve the problem; peace, strength, and courage for you and you!

  3. I found my way to your blog through a post from Barb Farlow today. I realize this comment is several weeks after you made this blog post, but I had a couple suggestions if you haven't resolved Lily's vomiting yet.

    Our 21 month old daughter Alegria has full trisomy 13 and we have dealt with projectile vomiting on and off since birth ESPECIALLY after recuperating from sickness.

    The first thing that came to mind was I wondered if Lily has had any issues with constipation. Our daughter's digestion always slows drastically after any gastrointestinal bug, but I have found that if I can get her bowels moving normally again then her stomach will follow fairly soon after.

    Also are you venting (ie burping) her through her g-tube more frequently? Our daughter typically doesn't need burped any more EXCEPT for when recuperating from a stomach bug.

    Also one thing we do during any illness, is run our daughter on a continuous feed instead of a bolus and gradually switch back to bolus as she tolerates. Coughing always triggers vomiting with her.

    I don't know if any of this is helpful, but just thought I'd share what Ive learned in case in might be helpful.