***rsd12*** — The Bump
Special Needs

***rsd12***

thanks for commenting. I believe i even commented on your post when (Owen?? i believe) had his last surgery... you were asking how to explain to him what was happening..(something along those lines)

 Cooper has an incomplete unilateral lip and cleft palate. He's feeding from a haberman right now and doing okay. Well i should say hes doing well cause he's almost gaining an ounce a day. Just being that I have twins (the other one is gaining almost 2 ounces a day) I feel like he is behind. He is the smaller twin. They were born at 34 wks and 5 days so preemies which give him another slight disadvantage for him.  He gets tired after 15 minutes of feeding. Sometimes he doesnt take his full feeding.

Did you ever have any feeding issues and how did you overcome them? How did you "keep your cool" about the whole situation?  

 Both boys also have to get blood drawn to have their thyroid tested at 2,4,6 weeks. Did they do anything to test for brain development issues? 

Thanks.

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Re: ***rsd12***

  • :::butting in:::

    DS1 had a complete unilateral cleft lip and palate. We had several feeding issues and was labeled FTT. We were feeding every hour and a half and it was taking him 30 minutes or more to finish a feeding. It was terrible. The nutritionist on our cleft  team put him on a higher calorie formula mix to try to up his calories. It worked and as he gainied and got stronger his feeding times slowly got faster.

    They never tested Keegan for brain development, but he was hitting milestones before/right on time. 

    I don't know what you mean by "keep your cool," but if you have anymore questions feel free to ask.

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  • thanks for butting in. What is FTT? We supplement two feedings a day with Cooper on a 22 calorie.

    I just get really frustrated and down on myself when he doesnt finish the minimum of what hes supposed to be doing (48 mls) im constantly watching the clock while he's eating and i know me being anxious probably affects him. I dont want to teach anyone else how to feed him cause i dont want one feeding to be bad.  SO has only fed him a handful of times cause its just easier for me to do it. So the backlash of that is, i felt like i havent bonded with my other son.

    When did you notice him getting better at eating? Was it just a learning process for you and him?

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  • Failure to thrive.

    Don't get frustrated! I know its easier said than done, but all you can do is keep offering and keep feeding. It was a learning process for us. We used the pigeon feeder which was amazing. It looks like it is a lot easier than the haberman. You don't have squeeze the bottle, he just presses his gum on the bottom. Teach you SO to feed him and bond with your  other son. I really wish I had used the help I was offered. If you are pumping on top of this, you are amazing! I quit pumping because I couldn't enjoy my baby. Kudos to you for doing it with two. I wouldn't have made it the first week with two.

    So far we have been through two surgeries and should be having another in the new year. If you have anymore questions, feel free to ask.

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  • imageMADforever2009:

    thanks for commenting. I believe i even commented on your post when (Owen?? i believe) had his last surgery... you were asking how to explain to him what was happening..(something along those lines)

     Cooper has an incomplete unilateral lip and cleft palate. He's feeding from a haberman right now and doing okay. Well i should say hes doing well cause he's almost gaining an ounce a day. Just being that I have twins (the other one is gaining almost 2 ounces a day) I feel like he is behind. He is the smaller twin. They were born at 34 wks and 5 days so preemies which give him another slight disadvantage for him.  He gets tired after 15 minutes of feeding. Sometimes he doesnt take his full feeding.

    Did you ever have any feeding issues and how did you overcome them? How did you "keep your cool" about the whole situation?  

     Both boys also have to get blood drawn to have their thyroid tested at 2,4,6 weeks. Did they do anything to test for brain development issues? 

    Thanks.

    Sorry it has taken me so long to respond, so busy with the holidays & my 2nd son's birthday yesterday! 

    I was surprised at how easy explaining things to him would be & at that age it was still hardest on us as parents.  He really trusts us ; ) But we don't learn this until we are there!

    We used the pigeon bottles & nipples & had a really tough time the first week.  His pediatrician recommended putting him on a feeding schedule & it really changed our world!  I do not know anything about the haberman but with the pigeon bottles you could really help them eat.  It was still taking him about 45mins- 1 hour to eat at first.  The schedule really helped since he learned to take what he can within 30 minutes & a couple of days later he was drinking the entire bottle within 20 mins.  Cleft babies have to work harder at eating, so they definitely get tired more quickly & burn more calories while eating.  Your son is still so young, he will get the hang of it.  Plus as long as he is gaining - that is what matters. My oldest was a small boy (he has caught up now), never FTT. 

    With my youngest we are dealing with FTT right now (no feeding issues, just burns way too many calories).

    I am guessing the blood work is because they were born on the earlier side.  All of my boys were born full term.  Well, with the youngets he did have blood work because of jaundice.

    The first year is tough, plus you have 2 little guys to take care of! One that will need a little more from you right now.  You will get through it! Do not compare their weight, Cooper is going to have a tougher time gaining weight. Take it day by day.. some days are better than others.. plus with the added hormones & lack of sleep.. just having a newborn is hard enough, you have 2, plus the Cleft.  Things will get better ; )

    Feel free to email me too... [email protected].

    I have been through a lot with Owen & everyday I feel so blessed to have him in my life!

     

    Boy 1 2/06 - Boy 2 12/07 - Boy 3 9/09
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