Wednesday, April 9

Pain.


Remember how I'm that mom who complains about having, "a hard baby"? Well, this past week has given me a guilty slap in the face for ever saying that. 

Will has always been hard, you guys know that. (My blog has been a great place for me to vent and get support from other moms out there who have had difficult babies too. And so I've probably given the blogosphere an ear-full on that subject.. my apologies.) Since the day he was born, he had the most piercing scream. And we actually had several family members comment about it. Both Chris and I's moms mentioned that he sounded like he was in pain. 

At 2 months, we started him on acid reflux medicine and things improved. But Chris and I both felt like there was something more going on. His medicines would work, then not work, we would try something new, and repeat..  and it just felt like it never ended. 

^^ We even tried a chiropractor! Which actually seemed to help a little ^^

So fast forward 9 months. After a lot of sleepless nights, different medicines, frustration, and many tears (his AND mine) later, we are finally getting to the bottom of things.

I took the nugg into his 9 month check-up with guns out and blazing. I was determined to make my pediatrician look further into his "issues." I was sick of the routine answer, "Oh, it's normal at his age, he will grow out of it, blah blah blah." 

I started off crying, and within seconds, got momma-bear-type-angry trying to explain to her why I really truly believed something wasn't right. And guess what? She listened. And I was surprised. Because I didn't actually have any hard evidence, my heart just knew something was wrong. 

So she sent me to Primarys that day to get a chest x-ray. She called back not even two hours later explaining that something was indeed wrong. He was showing signs of severe asthma, there was a thick lining down his airway and around his lungs, and his lungs were hyper inflated. She was confused as to what would be causing that and said that she'd never seen anything similar on a baby so young. So she set up more tests for the next day at Primarys and immediately started him up on SEVEN different medicines.


That night was tough on Chris and I. And you know what's weird? We really didn't talk much. It was like nothing we said to one another would help the situation. So we just laid in our bed, silent, sick with worry. 

So we headed up the next day. As we sat in the waiting room, several babies passed us in little hospital cribs, hooked up to monitors, IV's, etc.. and it was heartbreaking to say the least. I gained a new sense of sympathy and respect for the parents of those babies. Oh, bless all you mommies out there who have to watch your baby go through that kind of situation. 

The test they performed that day was an Upper G.I. fluoroscopy. Basically they tied him down to a board (so traumatic, but he handled it better than expected), and made him drink a dye. He was under a live x-ray so we were able to see the dye go down his throat and into his belly. 

{{Let me rewind really quick. When his pediatrician was explaining this test to me, she said, "I don't normally like to do this test because the majority of the time it doesn't show us anything. Because even if a baby does have reflux, it doesn't always happen during the 15 minute test. But that doesn't mean they don't have it..." So I wasn't really expecting to see anything alarming. }}

So we watched as the dye went down his throat, and pooled into his belly. And only about 3 seconds later, it started coming back up his throat. And then it went back down. And then back up. And back down. Andback up. Repeated about TEN TIMES. My heart sank as I watched. The pain that he had been going through for the past nine months was now visibly evident right in front of me. 

Dr. Hornyik called the next day. "This is a very intense case of reflux. It's rare to see the dye come up even once during the test and Will had 10-12 refluxes in a period of 5 minutes. If he hasn't been screaming through his entire feedings, then he is handling the pain remarkably well. Imagine how you felt during pregnancy with heart burn. He probably feels that way the majority of every day." 

^^ Explains why we've seen way too much of this sad face ^^

We've noticed that Will always clenches his fists really tight while he's eating, or violently scratches at things around him. And now we know that that was probably his way of channeling the pain, so that he could get through each and every feeding. It hurts my heart to even talk about... This sweet boy, who I've constantly complained about, what just hurting. All the time.  

The gist of it is that he has an insane bout of reflux. And when the acid comes up, a small amount spills over into his lungs. So he's aspirating. Which explains why his lungs are in such bad shape. They have been constantly irritated for who knows how long. 

As of right now, we are working on getting his lungs back to normal and trying to get a handle on the reflux. The absolute best outcome would be for him to outgrow it. But as of right now, his pediatrician doesn't think that will be happening until he is at least 2 or 3. So we are praying we can get everything under control with medication. Otherwise, he will have to undergo a pretty brutal surgery to avoid causing permanent damage to his lungs. 

^^ Daily breathing treatments for the next six months. Any mommas have advice on 
how to get a baby to keep the mask on their face? We struggle with this. ^^

I love my little. It's hard to watch an innocent baby go through so much pain and not be able to do much about it. It's definitely made me more tolerant to the crying. Instead of feeling frustration, I just pick him up and hold him through it. 

The good news is that we've seen definite improvements over the last two days! He's been more relaxed and definitely a lot happier. It's such a huge relief to see him feeling better. Wish us luck in hoping that things continue to look up! 

9 comments:

  1. oh my goodness i follow your blog and my mommy heart breaks for you! We have had no luck with breathing treatments working. The only way we got him to work with the mask is to make a game out of it! it is so tough, I'm with you we have had a sick baby the whole time as well and are now on flo-vent everyday and that seems to be helping with the inflamed lungs. Poor little guy I sure hope you get some answers, I wish to take the pain away from you!

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  2. I just learned about all of this in nursing school! I'm so sorry you have to go through it. You guys are in my prayers.

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  3. Good for your sticking to it and following your parental intuition. So sad for little Will, but I'm glad you finally got to the bottom of it. I hope things continue to look up for you and your cute family!

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  4. I am so sorry! It is so difficult watching your little one struggle. I am so happy that your pediatrician listened to your concerns and you were able to get some answers. Praying that things look up for you guys here on out.

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  5. Oh my goodness, Lauren! I'm so sorry for your little bean, and you! I can't even imagine watching him go through that. You'll be in our thoughts and prayers, hoping the medication does its job! You're a wonderful mommy, keep it up!

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  6. Lauren-little Will was certainly been blessed with a wonderful Mom and Dad, so much patience you've shown. As a family Will maybe be fussy but you know his grandparents are wrapped around his finger! We adore him! Hopefully the little fella Will now be pain free or at least it won't be constant. Your family is in our hearts and prayers.

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  7. I am so sorry you're having to go through this! My little girl was recently in the hospital - it's so, so hard to know your child is in pain. I just started following your blog, but please know that you're in my thoughts and prayers! Hopefully little Will gets feeling better soon.

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  8. Oh this post made me cry. Poor baby. I'm impressed with your mothers intuition. Way to follow your gut. I hope thkngs get better soon.

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  9. Oh my gosh! For some reason my comment wouldn't post, so hopefully this will! I just found your blog and just have to tell you I am so sorry you have to go through this! My baby had acid reflux until 7 months and we couldn't figure it out. She was no where near as serious or in pain as little WIll is, but I can imagine your frustration and pain as a mother. Your family is the cutest! I really hope he starts feeling better so you can all be at peace.

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