Lukas the little trooper

So, as with many people on the forum, I recently became a parent. Though, with a twist.

On 11/11, Lukas James Paul Hill was born with both a bilateral cleft lip and bilateral cleft palate. This has been an eye opening experience, and I'm very humbled by the perseverance of my son after a little over two months of life.

Lukas spent the first six days of his life in the NICU due to a breathing issue that went away quickly but also to help both me and my wife plus Lukas learn how we needed to feed/eat. He blew the nurses away with his progress.

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Here you can see his lip, I believe he was only a few hours old in this picture. I can never tell because everywhere we were had no windows, so my whole internal clock was thrown off.

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After the sixth day, we were allowed to go home. This was our first stressful day with baby Lukas because he was inconsolable, and we didn't know what we were doing wrong. Eventually it came about that he needed to sleep at an incline due to his cleft as well as he suffers from reflux. After we got his sleeping arrangements figured out, he became the sweet, quiet baby they raved about in the NICU.

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He also got to meet Santa, who was actually G-daddy. I think he knew, because he was giving Santa a dirty look.

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This was technically yesterday, right before his surgery to repair the lip. He's a fighter and got through it all great.

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This is right now, as I stay with him in the hospital tonight. We're getting ready to go to sleep, and he's not having any of it.

I'll periodically update this with more pictures as he develops into his lip and more surgeries to come.

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He's wonderful Kodie.
Good luck with his progress and surgeries!

Congratulations on the birth your beautiful son! I know you know this already but he will forever change you and he will keep changing you. My son is my heart. Looks like yours is too.

Congrats again!

I know we have our share of disagreements but I wish you luck on your journey with your son and wish the best for him to recover without any issues.

I'm not a parent and probably never will be, so I haven't the slightest idea about any of this but it sounds like a lot to deal with.

It can be, but we at least knew about the difficulties ahead before he was actually born. I couldn't imagine him being born and then finding out he was cleft.

From the start everyone involved in his care has said first this step, then this step, then this step. It's all been laid out for us with one of the top teams in the nation for this. He's already got an ear nose throat doc looking at him, the surgeon of course, and then an audiologist/speech pathologist will help with hearing and speech, and finally a orthodontist to round out the extensive dental work he'll need.

We haven't met everyone in the team yet, but so far we've had nothing but good experiences.

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And he picked a good day to be born...11/11 is mine too :)

Oh he's such a cute baby! I'm so glad he's been such a trooper threw all of this. My best friend Hannah is apart of Operation Smile and lived/worked in India for a year and helped children there get surgeries to fix their clefts. Definitely keep us updated on his progress! I love seeing them progress through this, it's amazing to see :)


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Your son is just beautiful! Children are such a blessing and I am so glad that your baby boy is doing so well.

He's beautiful. Good luck to him and your whole family with his recovery and future surgeries. He looks like an amazing little guy!

I love him. He's such a sweetheart. My thoughts are with you guys through this. He's going to bounce right back from surgery, you just watch! :)

Not bad... For a boy... :p

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Originally Posted by DooLittle

I love him. He's such a sweetheart. My thoughts are with you guys through this. He's going to bounce right back from surgery, you just watch! :)

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He's doing great, we're home now and he's eating well. Just waiting for the tape to fall off and then he gets the nasal splints (they helped form his nose right now) next Thursday or Friday. He's not in pain as far as we can tell, but we're keeping up in Tylenol just in case.

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poor baby, you guys are a strong family! Good luck to you guys!

http://m.huffpost.com/us/entry/3860490/

Slightly different situation, but the note that was left clearly applies here. You obviously rock!

Congratulations.

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The tape came off.

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Mothers and fathers that fight for there child's quality of life are the only people who should be allowed to be parents. Thanks for sharing and hes gonna be a heartbreaker ;)


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Looking great! You'll have to post more pics once the bruising and swelling go down all the way. Great progress so far, though.

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A medium update, here is the scar healing up nicely!

However, Lukas has contracted RSV which is very dangerous for kids his age. We believe he caught it at the Children's hospital because they had an outbreak and decided not to tell anyone who came into the hospital.

It's scary because so far five kids have died due to the strain Lukas has. He has his own nebulizer now, it's a cute little purple dragon. He's got a little rattling but we feel he hasn't got it as bad as some.

http://img.tapatalk.com/d/14/02/26/udyhy7av.jpg

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No bueno! RSV is a nasty critter. The good news is that Ribavirin usually hammers it pretty quickly. He looks great, though! Hopefully this will all be behind him soon. I'll be cheering you guys on.

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Poor little guy. The scar looks great. I hope he's ok!

His scar looks great but I'm sorry to hear he's sick :( I hope he's feeling better soon and it's not serious.

His scar looks great. Sorry to hear he's sick. Hope he's on the mend soon!

Wish my bronchitis nebulizer could be something that cool…mine is a portable inhaler lol
I'm sure he'll get well soon :gj:

He's a powerful kid, you'll get through it K. :gj: sending good wishes your way!

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Thanks guys.

We're still doing breathing treatments and he's due for a checkup tomorrow at 145. I'll let everyone know how that goes afterwards.

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omg howd i miss this thread! Kodie, i am so sorry to hear about your little boy getting sick. But if hes anything like you, he will get through this. Hell be in our thoughts....keep us posted.

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What a beautiful little man! Congrats and Good luck!!

He's finally gaining weight! At just 0.3 ounces shy of 13 pounds, he's already crawling! http://img.tapatalk.com/d/14/04/04/y8e6yput.jpg

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He's adorable. Glad he's doing well for you. :)

Oh my goodness cutest little baby everrr!!! Look at that adorable smile and big beautiful eyes! Ugh too cute I can't take it.


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Just a quick picture plug for now.
He's mastered crawling, we're starting to work on walking and he's eating a good four ounces of stage 2 baby food for lunch and dinner now.

Surgery for the palate is in December!

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Awesome! Looks like he's getting that whole dog riding thing down pat!

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Originally Posted by Kodieh

http://img.tapatalk.com/d/14/05/31/3aqygy5a.jpghttp://img.tapatalk.com/d/14/05/31/ebeqymu8.jpghttp://img.tapatalk.com/d/14/05/31/avabe8eb.jpg

Just a quick picture plug for now.
He's mastered crawling, we're starting to work on walking and he's eating a good four ounces of stage 2 baby food for lunch and dinner now.

Surgery for the palate is in December!

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Look at Lukey-poo! All smiling! :)

Always! He had the receptionist, four nurses, and the dentist all in a tizzy because he was in such a good mood.

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Day of the palate surgery wish us luck.

Will do. You, your wife and your son will be in my thoughts and prayers.

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Originally Posted by Kodieh

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Almost a year later, same chair same kid. Completely different.

Best of luck to you and your family Kodie, I'm sure everything will work out great.

Lukey poo rocks!! 💜 him.

Cute kid, hot mom! :)