Nico's Cleft Journey

[AllisonPitbullLvr]

Wow you are so strong lady! How lucky little Nico is to have such a brave momma. I hope to follow along and see the positive updates as his journey continues.

[Kilter]

That's awesome and glad to hear he's doing well! Let me know when you come to Calgary if you need anything!

[NicoleLJ]

Thanks guys.

Kilter thanks for that. We have some awsome friends we stay with when there. Good thing too because we bring Daya and Sheena as well. Luna stays with her favorite buddy here in our city though. Our friends adore the dogs too and they have a granddaughter and two sons who play with them like crazy too. So while we are gone with Nico they get plenty of attention.

[NicoleLJ]

The worry can start now. We have a surgery date for little Nico. He will be going in on Tuesday March 5th. Sigh.... I am sooo not ready for this. He is strong, healthy and by then will be just a week over 4 months old. Which is what they told me they were going to try and aim for. But most of the time(excluding when I am feeding him since I have to try and keep it covered) I don't even see his cleft. I just see my adorable, happy little boy. With eyes that light up when they see me and a smile that is so infectious. Now he is starting to coo and make lots more sounds. I almost forgot this surgery was going to be happening. Don't get me wrong, I know he needs it and we will make sure he gets everything he needs. I just worry. He is just a baby. I am an adult and surgery scares me when I had to have it. I am even more scared for him.

Here are some pictures of my perfect little angel that were taken today:

[Airn]

I hope everything goes well for him. I had a cleft palate when I was born as well. The doctors told my mom I would have trouble speaking. I have ever had speech problems. I had a lot of ear infections due to my throat problems. Hopefully you won't have to deal with those. It's a very stressful situation but if all goes well, he won't remember any of it. If I was not told of my problem I would have never known. Not having the ball thingy is weird but that's the only difference. Science can do so much today. I wish him a speedy recovery. He seems to be a happy baby regardless.

[NicoleLJ]

Thanks Airn. Nico has only a cleft Lip and a notch in his gums. For that I am so thankful. Thank you for sharing part of your experience. That helps a lot.

In reality this surgery is minor compared to his next one. But that fact that he is so little is the hardest part for me. At his next surgery he will be having bone removed from his hip to put where the missing bone is under and below his nose. His next surgery won't be till he is 8 or 9. One lady we met at the Childrens Hospital during our wait for Nico's appointment, her son had had such an extreme cleft lip/pallet that when they did his pallet surgery they had to keep him in a coma for a month. Such a stong woman this mom was telling us her sons journey.

For Christmas his presents are all things he can do while his arms are braced(still loads of fun too when the braces are off) that way he has several things to help distract him while he heals. I hope it will make things easier.

[NicoleLJ]

Just got a letter from the Children's hospital. Nico's next consultation appointment is scheduled for January 16. So another 3 day trip. I think it is just to see how his cleft is doing as he is growing so they can plan his surgery. THis time it looks to be only an hour of appointments though. So shorter then the 4 hour of appointments when he was 2 weeks old. So should be easier and not throw his sleep schedule off too much. We will travel there the day before and stay with friends and then come back on the 17th. We hate doing a long drive, then an appointment and then drive agian. So this way it is just more relaxing for everyone and the drive can be planned for when he naps which makes for an easier trip.

Took these photos today. He is really rocking the snow man. lol






I am thinking of getting a couple of teddy bears and doing them up like Nico's cleft bear to leave at the childrens hospital for them to give to other babies with clefts. They only take 5-10 minutes to do. It is just a matter of finding the money for the teddies themselves. What do you guys think?

[Saeleofu]

I am thinking of getting a couple of teddy bears and doing them up like Nico's cleft bear to leave at the childrens hospital for them to give to other babies with clefts. They only take 5-10 minutes to do. It is just a matter of finding the money for the teddies themselves. What do you guys think?

I think it's a great idea. You can find like-new stuffed animals at thrift shops for 50 cents or $1 usually. Wash them and they're good to go.

[JessLough]

The general rule for hospitals is to not accept anything like stuffed animals, especially if they come from a house with dogs, for health reasons. (allergens can stay in them even after washing, etc)

Heck, even toy donations have to be unopened in the box.

[-bogart-]

Call and ask nicole. I still have the bear the picu gave to Caleb when he was in there a lot. I know there
Was a no latex rule. But the bears and stuffed animals filled the gift shop also. He is looking so good . Give him kissess from the deep south