Nico's Cleft Journey

Discussion in 'The Fire Hydrant' started by NicoleLJ, Nov 6, 2012.

  1. NicoleLJ

    NicoleLJ PSD Partner

    Joined:
    Apr 18, 2004
    Messages:
    1,600
    Likes Received:
    0
    Trophy Points:
    36
    Gender:
    Female
    Occupation:
    breeder of WSS, Stay at Home Mom
    Location:
    Canada
    Home Page:
    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.

    [​IMG]

    [​IMG]

    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.

    [​IMG]

    [​IMG]

    [​IMG]

    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.
     
  2. Renee750il

    Renee750il Felurian

    Joined:
    Dec 20, 2003
    Messages:
    94,266
    Likes Received:
    0
    Trophy Points:
    36
    Occupation:
    3, Bimmer, GSDX (m); Kharma, Fila Brasileiro (f);
    Location:
    Where the selas blooms
    Home Page:
    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.
     
  3. smkie

    smkie pointer/labrador/terrier Staff Member

    Joined:
    Dec 16, 2004
    Messages:
    55,144
    Likes Received:
    28
    Trophy Points:
    48
    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.
     
  4. -bogart-

    -bogart- Member of WHODAT Nation.

    Joined:
    Jun 9, 2008
    Messages:
    3,192
    Likes Received:
    0
    Trophy Points:
    0
    Location:
    South East Louisiana
    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.
     
  5. SoCrafty

    SoCrafty New Member

    Joined:
    Jul 4, 2011
    Messages:
    505
    Likes Received:
    0
    Trophy Points:
    0
    Occupation:
    2
    Location:
    US
    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!!!
     
  6. NicoleLJ

    NicoleLJ PSD Partner

    Joined:
    Apr 18, 2004
    Messages:
    1,600
    Likes Received:
    0
    Trophy Points:
    36
    Gender:
    Female
    Occupation:
    breeder of WSS, Stay at Home Mom
    Location:
    Canada
    Home Page:
    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:
    [​IMG]

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

    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

    [​IMG]

    [​IMG]

    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.

    [​IMG]

    [​IMG]

    [​IMG]

    [​IMG]

    So that is our newest update. I will add more as more happens.
     
  7. Dizzy

    Dizzy Sit! Good dog.

    Joined:
    Sep 14, 2005
    Messages:
    17,761
    Likes Received:
    0
    Trophy Points:
    36
    Occupation:
    Not enough.
    Location:
    Wales
    Aww little man!!! Glad he got some answers.
     
  8. Fran27

    Fran27 New Member

    Joined:
    Mar 15, 2005
    Messages:
    10,641
    Likes Received:
    0
    Trophy Points:
    0
    Location:
    New Jersey
    Great it went well!
     
  9. JoLeigh

    JoLeigh New Member

    Joined:
    Sep 14, 2010
    Messages:
    581
    Likes Received:
    0
    Trophy Points:
    0
    Location:
    Greenville SC
    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.
     
  10. NicoleLJ

    NicoleLJ PSD Partner

    Joined:
    Apr 18, 2004
    Messages:
    1,600
    Likes Received:
    0
    Trophy Points:
    36
    Gender:
    Female
    Occupation:
    breeder of WSS, Stay at Home Mom
    Location:
    Canada
    Home Page:
    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.
     
  11. AllisonPitbullLvr

    AllisonPitbullLvr New Member

    Joined:
    Oct 4, 2012
    Messages:
    886
    Likes Received:
    0
    Trophy Points:
    0
    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.
     
  12. Kilter

    Kilter New Member

    Joined:
    Jul 4, 2012
    Messages:
    536
    Likes Received:
    0
    Trophy Points:
    0
    That's awesome and glad to hear he's doing well! Let me know when you come to Calgary if you need anything! :)
     
  13. NicoleLJ

    NicoleLJ PSD Partner

    Joined:
    Apr 18, 2004
    Messages:
    1,600
    Likes Received:
    0
    Trophy Points:
    36
    Gender:
    Female
    Occupation:
    breeder of WSS, Stay at Home Mom
    Location:
    Canada
    Home Page:
    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.
     
  14. NicoleLJ

    NicoleLJ PSD Partner

    Joined:
    Apr 18, 2004
    Messages:
    1,600
    Likes Received:
    0
    Trophy Points:
    36
    Gender:
    Female
    Occupation:
    breeder of WSS, Stay at Home Mom
    Location:
    Canada
    Home Page:
    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:
    [​IMG]

    [​IMG]

    [​IMG]

    [​IMG]

    [​IMG]

    [​IMG]

    [​IMG]
     
    Last edited: Dec 6, 2012
  15. Airn

    Airn New Member

    Joined:
    Nov 12, 2012
    Messages:
    1,044
    Likes Received:
    0
    Trophy Points:
    0
    Occupation:
    2
    Location:
    Bentonville, AR
    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.
     
  16. NicoleLJ

    NicoleLJ PSD Partner

    Joined:
    Apr 18, 2004
    Messages:
    1,600
    Likes Received:
    0
    Trophy Points:
    36
    Gender:
    Female
    Occupation:
    breeder of WSS, Stay at Home Mom
    Location:
    Canada
    Home Page:
    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.
     
  17. NicoleLJ

    NicoleLJ PSD Partner

    Joined:
    Apr 18, 2004
    Messages:
    1,600
    Likes Received:
    0
    Trophy Points:
    36
    Gender:
    Female
    Occupation:
    breeder of WSS, Stay at Home Mom
    Location:
    Canada
    Home Page:
    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
    [​IMG]

    [​IMG]

    [​IMG]

    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?
     
  18. Saeleofu

    Saeleofu Active Member

    Joined:
    Oct 9, 2009
    Messages:
    9,036
    Likes Received:
    0
    Trophy Points:
    36
    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.
     
  19. JessLough

    JessLough Love My Mutt

    Joined:
    May 16, 2009
    Messages:
    13,402
    Likes Received:
    2
    Trophy Points:
    38
    Gender:
    Female
    Occupation:
    Kennel Manager
    Location:
    Guelph, Ontario
    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.
     
  20. -bogart-

    -bogart- Member of WHODAT Nation.

    Joined:
    Jun 9, 2008
    Messages:
    3,192
    Likes Received:
    0
    Trophy Points:
    0
    Location:
    South East Louisiana
    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
     

Share This Page