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Old 11-06-2012, 11:38 AM
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NicoleLJ NicoleLJ is offline
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Default Nico's Cleft Journey

With all the baby threads I thought I would start a thread strikly about Nico's Journey in repairing his cleft lip and the notch in his gum line. I don't know how many moms here have babies born with cleft lips/palettes but I thought it would be good for moms just finding out. Since this will be strikly about his cleft and updates about it I thought I would keep it seperate from his weekly/daily updates/picture thread. I hope this is ok.

Nico was born with a Unilateral incomplete cleft on the left side of his lip. This means it only partially goes up toward his nostril but does not enter it as the pictures will show. He also has a notch in his gum line as well.





When we first found out that he had a cleft via an ultrasound we were worried about what it would mean. We were told it went all the way up into his nostril but when he was born they discovered it didn't. I was very worried about breast feeding. So many people told me this would be impossible since getting a latch might be too difficult or it would require so much work on his part that it would exhaust him. Thanks to some wonderful support groups in facebook and also from one of the wonderful members here I learned that there are different ways to try and help a baby with a cleft successfully breast feed. Reguardless though I did pump for a week prior to him being born just in case he could not latch we would then have breast milk to give him.

This was all pointless for us though. Nico had no issue with breast feeding at all. None. And in the 11 days since he was born he has grown by leaps and bounds. We do feed him one bottle at night, by daddy, of breast milk. But the rest of the time he gets it straight from the breast. His cleft when I feed him just needs to be slightly covered my the breast to help ensure he does not get extra air as he sucks. He also requires interrupting when feeding to be burped since he can get just that little bit of extra air trapped. If not interrupted regularly he can end up with a large air bubble that can cause him to place his entire meal all over you.

Now tomorrow is his first appointment with the cleft lip/palate clinic and that is why I thought to start this thread. He will be seeing a plastic surgeon, an ear, nose and throat doctor, a peatrician and a audiocologist(sp?). I was warned it will be about a 4 hou evaluation. We will learn more there about what surgeries he will need, check ups, care before and after surgeries and so on.

So one of my concerns was making sure Nico feels safe with all these people and new situations. One thing I saw on one group to help a child with repeat surgeries to feel more secure was a teddy bear. They take the bear and sew in a stitch site on the bears face of where the child will need the repair. This bear is only taken out for doctors visits, surgeries, recoveries and so on. So I made Nico one from a bear given to us by the pregnancy support center here.







Anyway I have got to start getting everything ready for tomorrow. I will update this thread any time there is new news we have learned, surgeries, doctor visits and so on. Feel free to post your journy as well if you and your baby/child are on a cleft journey. This will hopefully help relieve the stress and worried for those just beining their journey. I hope this is ok. Along with keeping all my friends updated on Nico's journey.
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Old 11-06-2012, 12:53 PM
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good wishes for an easy, boring journey through surgeries and recoveries -- for Nico and all of you <3

The bear is a wonderful idea. Even though it won't register with him now, when he's older it will.
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Old 11-06-2012, 01:28 PM
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Good wishes from us too. I am glad you have this from the beginning because of an experinece I had with my son, I feel with all my heart that far more is realized then we would ever guess at. Glad you have such a caring team for him.
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Old 11-06-2012, 02:56 PM
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Awesome. He is such a handsome little man. Hugs and I can't wait to take this journey with you. Caleb used to have a dog toy he carried back and forth from the hospital. Wonderful idea and the stitches are cute.
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Old 11-06-2012, 08:01 PM
SoCrafty SoCrafty is offline
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He is simply adorable I am glad they are able to start working on it now while he is younger.

I had a partial palate when I was born. I don't remember any of the surgeries etc., but I do remember a lot of people being so interested in my mouth. I remember how much I hated people looking in my mouth and looking at progress etc. (in the 80's the common thing was not to fix it until about the age of 2).

Even now its a little frustrating to answer every doctor, med student or dentist on why I don't have a uvula (the little 'hangy ball' in the back of your throat). My nose is shaped different from my family etc. Maybe when he gets a older, see if you can find play dates for him with other children that had the same condition? I would have loved to meet another kid when I was little that was just like me.

The bear is a GREAT idea btw!! I can't wait to see his progress!!!
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Old 11-09-2012, 10:43 AM
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Hi all. We are back from Calgary. Got back last night at about 6pm. Good thing we left when we did too or else we would have been trapped there till Sunday. A wicked snowstorm was hitting Calgary just as we left and was headed to our city(3 hours away) as well. But we made it back safe and sound ahead of the storm.

Here is what he wore to the evaluation:


And here is a picture of us driving up to the Childrens Hospital. It is painted to look like lego blocks:


Everywhere in there is designed for kids, tons of colors, even the furniture is designed to play on.

THe evaluation on Wednesday went great. They weighed him and he is now over his birth weight. He is back up to 9lbs, 7oz. Even the team evaluating him said he does not look to be that size. He is not the least bit chunky. He is lean and long though. lol He is also 21 inches long now. So growing perfectly. THey tested his hearing and he passed with flying colors. Though he did make it a challenge to do the test. lol Even the lady who does the test said it would be easier if they did the hearing test first before anything else because the babies are usually asleep at that point and it makes it easier if they are. But they did his 2 hours into his evaluation when he was wide awake. So it was interesting to say the least. Here is Nico about 2 1/2 hours into the evaluation





Basically what we learned is he will most likely need 3 surgeries in his life. The first one being when he is between 3-4 months old. Since he is growing so well and is so healthy and strong they thought the sooner the better for his lip surgery. Then when he is about 8-9yrs old he will need another surgery to replace some bone that supports part of his nose and also for his upper teeth. THat bone will be taken from his hip. Then the last surgery will be when he is a teen and that will be a nose surgery.

His first surgery will most likely be scheduled for late January or early February. I will know more when I call them in December to get the date. It is about a 4 hour surgery and he will need to stay in the hospital, on average, about 2-3 nights. But we can stay with him the entire time. So that is good. His arms will have to be in restraints for about 3 weeks as well. That will be the hardest part for Nico. He doesn't even like to be swaddled. Let alone have his arms restrained.

Everyone there was very nice, and very caring to Nico. They loved Nico's cleft bear too. They all made us feel very relaxed and answered any and all questions in great detail. They were very happy with how well he was breast feeding as well. So all in all it went very well. Here are some final pictures of Nico about an hour before we left.









So that is our newest update. I will add more as more happens.
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Old 11-10-2012, 02:26 AM
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Aww little man!!! Glad he got some answers.
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Old 11-10-2012, 07:35 AM
Fran27 Fran27 is offline
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Great it went well!
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Old 11-10-2012, 07:43 AM
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Thats great! Im with Renee I hope this journey throughout this part of his life is boring and everything goes smoothly. He is a beautiful baby Nicole that bear it to sweet.
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Old 11-11-2012, 11:26 AM
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Thanks so much for the support everyone. We were glad to get the answers we needed. Now we are just getting back into a comfortable schedule till the next time we have to head to Calgary.
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