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We're back from Nashville... Emmett update.


Forum: July, August & September 2012 Playroom

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  #1  
December 12th, 2012, 06:47 AM
LadyCoconut's Avatar Platinum Supermommy
Join Date: Sep 2005
Location: Georgia
Posts: 35,234
This will probably be long, but I want to be thorough. I feel like I didn't update in here while everything was going on as much so I don't know how much you guys know about what's been going on.

Emmett had rapid breathing at birth (39+1) but we were discharged normally. At four days old he was admitted to the children's hospital for rapid breathing and low oxygen. We spent 10 days there where he stumped lots of doctors as to what was wrong. A chest CT scan and several x-rays showed he had interstitial lung disease. We came home on a pulse ox monitor and with oxygen in case he needed it.

When I got home I googled more about his diagnosis... chILD is a broad term for many different types. hILD has a 21% mortality rate. I was horrified. The "gold standard" for diagnosing is a lung biopsy... but its pretty invasive. He'd be put to sleep and then they'd cut him open and he would have to have a pump in his lungs for several days to keep them inflated, etc. I wasn't eager to do this. The problem is chILD is really rare so there aren't many cases... like, just a couple hundred worldwide. So the great majority of doctor's haven't seen this and tehre isn't really a black and white idea of how to move forward.

Emmett has continued to thrive over the months though, and there's a FB group with other parents who have been an incredible resource for us. These other kids are usually very very ill... and Emmett is seemingly doing so well. Still, a lot of these other kids weren't sympatomatic for months after birth... and so I was just kind of waiting for the other shoe to drop all this time.

One of the original doctors who defined chILD and began research is in Nashville which is about a 5 hour drive from us. We emailed and spoke with her on the phone and she wanted to see Emmett. He needed another CT scan but the technique used was important and our pulmonary doctor here in ATL said they weren't able to do it here. So that's why we went to Nashville.

Monday we had an hour and a half long consult with the specialist about the disease and what it would mean for Emmett and how after we see how bad things are on the CT, our next step would be to biopsy so we could find out which type he has. Afterward he went down and they put him under anesthesia and he had the CT scan done. It was heartbreaking watching them carry off my baby who was screaming and crying and hadn't been allowed to nurse in five hours.

The next morning we met with the doctor to go over his CT scan. You guys... a miracle happened. HIS LUNGS HAVE HEALED! The odds of this happening were literally next to none... so much so that the possibility was never even discussed. He had just had his last x-ray a little over a month ago and his lungs had shown NO improvement since birth! and now... they look NORMAL. We were all ecstatic yet SHOCKED.

We speculated a lot over what may have happened to his lungs... but at this point we probably won't ever have an answer, and I can be okay with that as long as he is healthy! We weren't cut free entirely... we still need to follow up with our pulm for the next year or so and we are still waiting for him to stop dropping in % on teh growth chart... but for now we get to ditch our chILD diagnosis, and stop using the stupid pulse ox monitor that wakes us up with false alarms all night long... and I don't have to take him on an hour + long car trip once a month to get the synagis shots. We have a basically normal baby!

I just bawled almost the whole way home... letting go of all of this fear I've had for his future is amazing. It felt so underwhelming to just go home and pick up Lily from grandma's and hop back int othe normal routine. So with like two hours notice I invited family and friends to a local pizza joint to celebrate the good news! We had about 20 people show up... thye even brought balloons & a cake! I just held people and sobbed on their shoulders I'm SO RELIEVED!

Here's a few pics:

In the nicu as a newborn:



last week @ the pulm getting his 2nd synagis shot



The many faces of M&M on the drive to Nashville. Screaming and sweaty. Milk drunk. Stink eye. Haha


waiting on the anesthesiologist



people who came to celebrate last night:


the cake celebrating my little guy's HEALTHY LUNGS!!





thanks for letting me share... I wanna shout it from the rooftops! lol
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  #2  
December 12th, 2012, 06:49 AM
Hopefulpinkangel's Avatar Mega Super Mommy
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That is the BEST NEWS EVER!!!!
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  #3  
December 12th, 2012, 06:59 AM
Mom to Madeline
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Such wonderful news...I just actually cried. So glad everything okay!!! Yipppeee!
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  #4  
December 12th, 2012, 07:06 AM
Corrupt's Avatar Happy Mama
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Aww that brought tears to my eyes. I'm so happy for you guys
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  #5  
December 12th, 2012, 07:18 AM
ufmelissa824's Avatar Mega Super Mommy
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Location: Florida
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That's such great news Shannon! I'm so happy for you guys!
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  #6  
December 12th, 2012, 07:19 AM
Pixie Dust's Avatar Veteran
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Posts: 351
Okay... I just bawled like a big baby!

That is the best news ever! I hope things continue to improve and that Emmett has an amazing, normal life!

~*~HUGS!~*~
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  #7  
December 12th, 2012, 07:48 AM
lovemyleah's Avatar Platinum Supermommy
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I'm from September, but my baby was born August 28th...

I am so happy for you!! What awesome news for you and your boy!!
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  #8  
December 12th, 2012, 08:25 AM
therevslady's Avatar Built for Birth
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OH MY GOODNESS! I am so happy for you and your family! This is one of my favorite updates of all time! How wonderful!
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  #9  
December 12th, 2012, 09:19 AM
Sherry777's Avatar Blessed Mommy
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Thank you Jesus. You have me in tears. I'm so happy for your miracle.
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  #10  
December 12th, 2012, 09:25 AM
Mom2JDub's Avatar (formerly junie22)
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What an AMAZING update! I'm so happy that your little man is thriving. And, oh my, he is so incredibly cute!
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  #11  
December 12th, 2012, 09:30 AM
Blessed.Life's Avatar Mega Super Mommy
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that is amazing!!! woooooo hoooooo!!!
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  #12  
December 12th, 2012, 09:35 AM
one.juniper's Avatar Mega Super Mommy
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That is absolutely wonderful news!!!! I actually teared up, it must be such a relief to know he is going to be ok!!
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  #13  
December 12th, 2012, 09:42 AM
magz88's Avatar First Time Mum
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Location: Ontario, Canada
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I am so happy for you that your baby is healthy.
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  #14  
December 12th, 2012, 09:47 AM
aubers68's Avatar Mega Super Mommy
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I am over here in tears as well! So happy for you guys! You were blessed with a miracle!
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  #15  
December 12th, 2012, 09:47 AM
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What a great Christmas miracle.
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  #16  
December 12th, 2012, 11:29 AM
irunpink's Avatar Sophie
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Location: TX
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Great news! What a beautiful story and little boy .
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  #17  
December 12th, 2012, 11:29 AM
AllyssaM's Avatar Emmersyns Mommah
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Tears over here too. AMAZING update!!
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  #18  
December 12th, 2012, 12:03 PM
Jessimaaka's Avatar Pink in a house of Blue
Join Date: Dec 2011
Location: Ontario, Canada
Posts: 16,278
Such a fantastic update!! I am so happy to hear this!!!

WTG Emmett!
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  #19  
December 12th, 2012, 12:07 PM
Super Mommy
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Location: MO
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What fantastic news! Brought tears to my eyes. It just goes to show that miracles really do happen! Praise the Lord!
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  #20  
December 12th, 2012, 12:12 PM
Cylence's Avatar I'm a Toys 'R Us kid
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Broke out in tears too! Still crying!
Oh Shannon! That's fantastic news! Emmett is such a fighter, isn't he? That's just simply amazing!

The power of prayer, right? Go Emmett! The JM mommies love you very much little guy!
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